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Guideline Summary
Guideline Title
Palliative care for adults.
Bibliographic Source(s)
McCusker M, Ceronsky L, Crone C, Epstein H, Greene B, Halvorson J, Kephart K, Mallen E, Nosan B, Rohr M, Rosenberg E, Ruff R, Schlecht K, Setterlund L. Palliative care for adults. Bloomington (MN): Institute for Clinical Systems Improvement (ICSI); 2013 Nov. 81 p. [92 references]
Guideline Status

This is the current release of the guideline.

This guideline updates a previous version: Institute for Clinical Systems Improvement (ICSI). Palliative care. Bloomington (MN): Institute for Clinical Systems Improvement (ICSI); 2011 Nov. 62 p.

FDA Warning/Regulatory Alert

Note from the National Guideline Clearinghouse: This guideline references a drug(s) for which important revised regulatory and/or warning information has been released.

  • March 22, 2016 – Opioid pain medicines External Web Site Policy: The U.S. Food and Drug Administration (FDA) is warning about several safety issues with the entire class of opioid pain medicines. These safety risks are potentially harmful interactions with numerous other medications, problems with the adrenal glands, and decreased sex hormone levels. They are requiring changes to the labels of all opioid drugs to warn about these risks.

Scope

Disease/Condition(s)

Potentially life-limiting, life-threatening, or chronic progressive illnesses that might benefit from palliative care

Guideline Category
Evaluation
Management
Clinical Specialty
Cardiology
Critical Care
Family Practice
Geriatrics
Internal Medicine
Neurology
Oncology
Pulmonary Medicine
Intended Users
Advanced Practice Nurses
Allied Health Personnel
Health Care Providers
Health Plans
Hospitals
Managed Care Organizations
Nurses
Patients
Physician Assistants
Physicians
Psychologists/Non-physician Behavioral Health Clinicians
Social Workers
Guideline Objective(s)
  • To help clinicians understand the philosophy and structure of palliative care, as well as provide aims and measures to operationalize palliative care services
  • To increase the identification of patients who are in the early stages of a serious illness who would benefit from palliative care
  • To improve the effectiveness and comfort level of the primary care clinicians in communicating the necessity and benefits of palliative care with those patients with a serious illness
  • To improve the assessment of the identified patient's palliative care needs utilizing the domains of palliative care
  • To increase the percentage of patients in the early stages of a serious illness who have a care plan identified and/or documented
  • To improve the ongoing reassessment and adjustment of the patient's plan of care as the condition warrants, utilizing the domains of palliative care
  • To increase the completion, documentation and ongoing utilization of advance directives for patients with a serious illness
Target Population

Adult patients with a serious (potentially life-limiting, life-threatening, or chronic progressive) illness who may benefit from palliative care including patients who still desire curative or life-prolonging treatments and those who are best served by active end-of-life management

Note: This guideline will not assist providers in the identification or care for pediatric patients with life-threatening or chronic progressive illness. See Appendix C, "Pediatrics," in the original guideline document for special considerations for pediatric patients.

Interventions and Practices Considered
  1. Initiation of palliative care discussion
  2. Assessment of palliative care needs using a validated assessment tool
  3. Management of physical aspects of care, including pain control
  4. Management of cultural aspects of care
    • Cultural assessment that includes patient's view of dying, literacy and personal coping skills
    • Guidelines for multicultural patient/family communication
    • Guidelines for using professional medical interpreters
  5. Management of psychological and psychiatric aspects of care, including psychological assessment that helps differentiate grief from depression
  6. Management of social aspects of care
    • Social assessment
    • Referrals to caregiver service options, counseling, financial resources
  7. Management of spiritual aspects of care
    • Spiritual assessment
    • Chaplains on interdisciplinary care team
  8. Management of ethical and legal aspects of care
    • Patient's decision-making capacity
    • Advance care planning
    • Address medical futility
  9. Development or revision of palliative care plan and establishment of goals of care through shared decision-making
  10. Hospice care admission
  11. Management of imminently dying patients and bereavement process
Major Outcomes Considered

Efficacy of palliative care

Methodology

Methods Used to Collect/Select the Evidence
Searches of Electronic Databases
Description of Methods Used to Collect/Select the Evidence

A consistent and defined process is used for literature search and review for the development and revision of Institute for Clinical Systems Improvement (ICSI) guidelines. The literature search was divided into two stages to identify systematic reviews (stage I) and randomized controlled trials, meta-analyses and other literature (stage II). Literature search terms used for this revision are end-of-life care, advance directives, cultural and ethnic aspects in palliative care, cost and affordability of palliative care, and include literature in PubMed from July 2011 through July 2013.

Number of Source Documents

Not stated

Methods Used to Assess the Quality and Strength of the Evidence
Weighting According to a Rating Scheme (Scheme Given)
Rating Scheme for the Strength of the Evidence

Quality of Evidence and Strength of Recommendations

Category Quality Definitions Strong Recommendation Weak Recommendation
High Quality Evidence Further research is very unlikely to change confidence in the estimate of effect. The work group is confident that the desirable effects of adhering to this recommendation outweigh the undesirable effects. This is a strong recommendation for or against. This applies to most patients. The work group recognizes that the evidence, though of high quality, shows a balance between estimates of harms and benefits. The best action will depend on local circumstances, patient values or preferences.
Moderate Quality Evidence Further research is likely to have an important impact on confidence in the estimate of effect and may change the estimate. The work group is confident that the benefits outweigh the risks, but recognizes that the evidence has limitations. Further evidence may impact this recommendation. This is a recommendation that likely applies to most patients. The work group recognizes that there is a balance between harms and benefit, based on moderate quality evidence, or that there is uncertainty about the estimates of the harms and benefits of the proposed intervention that may be affected by new evidence. Alternative approaches will likely be better for some patients under some circumstances.
Low Quality Evidence Further research is very likely to have an important impact on confidence in the estimate of effect and is likely to change. The estimate or any estimate of effect is very uncertain. The work group feels that the evidence consistently indicates the benefit of this action outweighs the harms. This recommendation might change when higher quality evidence becomes available. The work group recognizes that there is significant uncertainty about the best estimates of benefits and harms.
Methods Used to Analyze the Evidence
Systematic Review
Description of the Methods Used to Analyze the Evidence

Not stated

Methods Used to Formulate the Recommendations
Expert Consensus
Description of Methods Used to Formulate the Recommendations

New Guideline Development Process

A work group consisting of 6 to 12 members that includes physicians, nurses, pharmacists, other healthcare professionals relevant to the topic, and an Institute for Clinical Systems Improvement (ICSI) staff facilitator develops each document. Ordinarily, one of the physicians will be the leader. Most work group members are recruited from ICSI member organizations, but if there is expertise not represented by ICSI members, 1 or 2 work group members may be recruited from medical groups, hospitals or other organizations that are not members of ICSI. Patients on occasion are invited to serve on work groups.

The work group will meet for 7 to 8 three-hour meetings to develop the guideline. A literature search and review is performed and the work group members, under the coordination of the ICSI staff facilitator, develop the algorithm and write the annotations and literature citations.

Once the final draft copy of the guideline is developed, the guideline goes to the ICSI members for critical review.

Revision Process of Existing Guidelines

ICSI scientific documents are revised every 12 to 24 months as indicated by changes in clinical practice and literature. For documents that are revised on a 24-month schedule, ICSI checks with the work group on an annual basis to determine if there have been changes in the literature significant enough to cause the document to be revised earlier or later than scheduled. For yearly reviewed documents, ICSI checks with every work group 6 months before the scheduled revision to determine if there have been changes in the literature significant enough to cause the document to be revised earlier than scheduled.

Literature Search

ICSI staff, working with the work group to identify any new pertinent clinical trials, systematic reviews, or regulatory statements and other professional guidelines, conduct a literature search.

Revision

The work group will meet for 1 to 2 three-hour meetings to review the literature, respond to member organization comments, and revise the document as appropriate.

A second review by members is indicated if there are changes or additions to the document that would be unfamiliar or unacceptable to member organizations. If a review by members is not needed, the document goes to the appropriate steering committee for approval according to the criteria outlined in the "Description of Method of Guideline Validation" field.

Rating Scheme for the Strength of the Recommendations

See the "Rating Scheme for the Strength of the Evidence" field.

Cost Analysis

The guideline developers reviewed published cost analyses.

Method of Guideline Validation
Internal Peer Review
Description of Method of Guideline Validation

Critical Review Process

The purpose of Critical Review is to provide an opportunity for the clinicians in the member groups to review the science behind the recommendations and focus on the content of the guideline. Critical review also provides an opportunity for clinicians in each group to come to consensus on feedback they wish to give the work group and to consider changes needed across systems in their organization to implement the guideline.

All member organizations are expected to respond to critical review guidelines. Critical review of guidelines is a criterion for continued membership within the Institute for Clinical Systems Improvement (ICSI).

After the critical review period, the guideline work group reconvenes to review the comments and make changes as appropriate. The work group prepares a written response to all comments.

Document Approval

Each document is approved by the Committee for Evidence-Based Practice (CEBP).

The committee will review and approve each guideline/protocol, based on the following criteria:

  • The aim(s) of the document is clearly and specifically described.
  • The need for and importance of the document is clearly stated.
  • The work group included individuals from all relevant professional groups and had the needed expertise.
  • Patient views and preferences were sought and included.
  • The work group has responded to all feedback and criticisms reasonably.
  • Potential conflicts of interest were disclosed and do not detract from the quality of the document.
  • Systematic methods were used to search for the evidence to assure completeness and currency.
  • Health benefits, side effects, risks and patient preferences have been considered in formulating recommendations.
  • The link between the recommendation and supporting evidence is clear.
  • Where the evidence has not been well established, recommendations based on community practice or expert opinion are clearly identified.
  • Recommendations are specific and unambiguous.
  • Different options for clinical management are clearly presented.
  • Clinical highlights and recommendations are easily identifiable.
  • Implementation recommendations identify key strategies for health care systems to support implementation of the document.
  • The document is supported with practical and useful tools to ease clinician implementation.
  • Where local resource availability may vary, alternative recommendations are clear.
  • Suggested measures are clear and useful for quality/process improvement efforts.

Once the document has been approved, it is posted on the ICSI Web site and released to members for use.

Recommendations

Major Recommendations

Note from the National Guideline Clearinghouse (NGC) and the Institute for Clinical Systems Improvement (ICSI): For a description of what has changed since the previous version of this guidance, refer to Summary of Changes Report -- November 2013 External Web Site Policy. In addition, ICSI has made the transition to the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system as a method of assessing the quality of evidence and writing recommendations.

The recommendations for palliative care are presented in the form of a table with a list of evidence-based recommendations and an algorithm with 20 components, accompanied by detailed annotations. The table and algorithm are provided in the original guideline document External Web Site Policy at the ICSI Web site for Palliative Care. Clinical highlights and selected annotations (numbered to correspond with the algorithm) follow.

Quality of evidence (Low Quality, Moderate Quality, and High Quality) and strength of recommendation (Weak or Strong) definitions are provided at the end of the "Major Recommendations" field.

As part of a grant from the American Board of Internal Medicine (ABIM) Foundation, ICSI is supporting the national Choosing Wisely® Campaign. The campaign's goal is to help physicians and patients talk about medical tests and procedures that are often used but may not be necessary and may in some cases cause harm. The Choosing Wisely logo will appear in the original guideline document whenever a recommendation from a medical specialty society participating in the Choosing Wisely Campaign is in alignment with ICSI work group recommendations.

Clinical Highlights

  • Planning for palliative care should begin early in the patient's journey of a serious illness. (Annotations #1, 2; Aim #1)
    • Where palliative care consultation is available, referral to this service should be considered early on in the patient's care if there are complex needs. Primary care clinicians should begin palliative care planning early through palliative care conversations with their patients. (Annotations #1, 2; Aim #1)
  • Health care providers should complete a systematic review of patients' palliative care needs and document patients' goals for care and advance directives. (Annotations #3, 4 to 9; Aims #3, 6)
  • Suffering is common in this patient population. It commonly presents itself in physical symptoms; thus, controlling symptoms to maximize patient comfort is a cornerstone function of palliative care. Also important are the recognition, assessment, and management of non-physical areas of suffering that are important to the patient. These include cultural, psychological, social, spiritual, financial, ethical, and legal issues. Where available, consultation with palliative care specialists should be considered for all of these symptoms. (Annotations #4 to 9; Aim #3)
  • The ability to address these issues depends on the quality of communication with patients and families. Setting realistic goals of care and providing realistic hope are essential. Engaging patients in decisions about their care increases their involvement and satisfaction. Shared decision-making is one method to engage patients. (Annotations #2, 3, 10; Aim #2)
  • Palliative care is compatible with all other medical treatments. (See the Introduction section in the original guideline document.)
  • Health care providers play an important role in the grief and bereavement processes by supporting the patient and family throughout the course of illness and following the patient's death. (Annotation #19)

Palliative Care Algorithm Annotations

  1. Patient Presents with New or Established Diagnosis of a Serious Illness

    Recommendation:

    • Palliative care should begin at the time of diagnosis of a serious condition and continue through cure, or until death and then into the family's bereavement period [Low Quality Evidence, Strong Recommendation] (Temel et al., 2010; Kass-Bartelmes & Hughes, 2004; Steinhauser et al., 2000; Morrison & Meier, 2004).

    Both clinicians and patients generally don't recognize early on those individuals who would benefit from palliative care planning. Early identification of patients with conditions that would benefit from palliative care can be accomplished by considering conditions and symptoms that are appropriate for palliative care services.

    The following Choosing Wisely® recommendation from the American Academy of Hospice and Palliative Medicine is in alignment with the above ICSI Palliative Care guideline recommendation:

    Don't delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.

    http://www.choosingwisely.org/doctor-patient-lists/american-academy-of-hospice-palliative-medicine External Web Site Policy

    General considerations clinicians should use to identify patients who would benefit from palliative care planning include:

    • Disease progression, especially with functional decline
    • Pain and/or other symptoms not responding to optimal medical treatment
    • Need for advance care planning

    Conditions that may prompt the initiation of palliative care discussions include debility/failure to thrive, cancer, heart disease, pulmonary disease, dementia, liver disease, renal disease, and neurologic diseases such as stroke, Parkinson's, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS). For more information on these conditions refer to the original guideline document.

    Many residents in long-term care facilities and patients with poor social support have these symptoms and should be assessed for palliative care.

    Unfortunately, accurately predicting death can only be identified by retrospective measures. Multiple studies have shown that physicians overestimate prognosis by a factor of two or more. The medical literature also shows that patients with terminal illness often don't recognize that they are dying, or are unable to acknowledge the fact even to themselves until very late. Life-limiting illness is usually defined as the question "Would you be surprised if your patient died within the next two years?" This definition significantly broadens the identified population associated with hospice care to those who would benefit from palliative care. Appropriate medical interventions need to address suffering that occurs due to pain, and other physical symptoms, and psychological issues. Other domains that should be addressed by an interdisciplinary team include cultural, spiritual, ethical, legal, and social issues. The care plan created includes the caregivers and family [Guideline]. Palliative care can occur simultaneously with curative therapies, or may be the sole focus of care.

  1. Initiate Palliative Care Discussion

    Recommendations:

    • Palliative care discussion or referral should be considered whenever a patient develops a serious illness [Low Quality Evidence, Strong Recommendation] (Strand, Kamdar, & Curry, 2013; Weissman & Meier, 2011).
    • Palliative care discussions should be included wherever a patient with a life-limiting illness presents, including the intensive care unit and the emergency department [Low Quality Evidence, Strong Recommendation] (Quest et al., 2013).

    A recent consensus panel convened by the Center to Advance Palliative Care developed primary and secondary criteria for two checklists – one upon admission and one for daily rounds – to be used to screen patient for unmet palliative care needs [Low Quality Evidence] (see the original guideline document). The hope is that a checklist approach combined with educational initiatives and other system-change work will allow hospital staff and clinicians engaged in day-to-day patient care to identify and begin to address palliative care needs themselves while reserving specialty palliative care services for more complex problems.

    Many clinicians believe they lack confidence and experience in discussing with patients the issues and decisions that come with having a serious illness—specifically recommendations about palliative care and hospice services.

    There are several excellent mnemonics available to help providers increase their knowledge, practice examples of these discussions, and generally obtain a better understanding of the emotions, questions and problems that may arise with patients and families at this time in their lives.

    One mnemonic found useful for this guideline includes:

    • ABCDE (Advance preparation, Build a therapeutic environment/relationship, Communicate well, Deal with patient and family reactions, Encourage and validate emotions) [Low Quality Evidence]

    Advance preparation: Obtain the patient's medical information and test results, if possible, so that you are fully aware of the situation. Mentally rehearsing the way you wish to present the information and options can give you a sense of how the conversation may go. Remember to individualize your approach for each given patient and family based on how much they know at that point and how they prefer to receive information. Make sure that you have an appropriately private location in which to have the discussion and that the session will be free of interruptions, including setting the pager to silent or leaving it with a colleague.

    Build a therapeutic environment/relationship: Try to find out how much the patient and family understand, how they want to be told (bluntly, gently, etc.), and how much they want to know at that time.

    • "If this condition turns out to be something serious, are you the kind of person who likes to know what is going on?"
    • "Would you like me to tell you the full details of the diagnosis?"
    • "If your condition is serious, how much would you like to know?" If the patient indicates that he/she does not want any information, it is important to "leave the door open." For example you may say, "That's OK. If you change your mind at any time, please feel free to talk to me or one of my colleagues."
    • Have family members or friends present as per the patient's preference, and take time to learn names and relationships of each support person present. Use touch and humor where appropriate, taking into consideration your relationship with the patient. Reassure the patient of your availability, set up follow-up appointments, and contact other clinicians about the situation where appropriate.

    Communicate well: Ask the patient for any questions. Speak truthfully but compassionately and avoid using medical terms or euphemisms. Say the words "cancer," "dying," "death," etc. Although a care clinician may be uncomfortable with these terms, they help with clarity of communication and accurate understanding by the patient and family of what is being said.

    Adapt the communication style to the education level and personal preference of the patient and family. For example, if the patient is a company executive who is used to calling the shots, this person may benefit more if provided with several different options to choose from rather than being told what to do. If the education level and preferred style are unknown, a good rule of thumb is to present information at a sixth through eighth grade level.

    Don't rush the process; allow time for silence, tears and questions. This allows the patient and family (if present) time to react to the news and to discuss concerns of the patient, and allows the patient to receive the news at his or her own pace [Low Quality Evidence]. Remember that the patient may not retain much of the information given beyond that of the diagnosis or prognosis, and may have to wait to "digest" what information can be absorbed. Strong emotions elicited in difficult conversations may distract the patient from hearing the full communication. Repeat important points and write things down and periodically assess the patient's understanding of the information and reactions to what was heard. Think out loud; help the patient and family feel they are part of the team. Visual aids, written question prompts (suggesting possible questions that a patient or family may want to ask), and the provision of audio tapes of the conversations may aid communication and recall of important points.

    Communicate any bad news to the patient and family. The clinician may want to deliver a "warning" statement prior to the bad news itself to prepare the patient (and family if present) for the communication that follows. For example, "I'm afraid I have (difficult/bad) news to share on (your/his/her) condition." Additionally, it may be advisable to ask a few open-ended questions prior to delivering the actual bad news to assess what the patient and family already know and their readiness to hear the news [Low Quality Evidence].

    Deal with patient and family reactions: Be sensitive to the emotional reactions of the patient and family. Recognize that denial, blame, intellectualization, disbelief and acceptance may be present to varying degrees and time frames. Watch for signs of depression and suicidality in subsequent visits. Be empathetic. Crying may occur but make sure that your tears are empathic in nature and not reflective of personal issues on your part. There may be anger from the patient and family about care received from you or another colleague; resist becoming defensive or argumentative about these issues. Try to deal with that particular patient's and family's cultural and ethnic norms.

    • "I was probably raised differently than you. Can you tell me how your family deals with these situations?"

    Encourage and validate emotions: During the discussion, periodically ask the patient and family how and what they are feeling and respond with empathy. If the patient (and family if present) is ready, discuss treatment options and arrange for follow-up to put those options into action. Talk with the patient about what this means for him/her, and what needs outside of the traditional medical scope he/she may have. It is important that the patient and family do not lose their sense of hope. Offer realistic hope. Communicating hope, even though a "cure" may not be possible, may be done by redirecting the focus of hope to keep the patient comfortable and as symptom-free as possible. Reassure the patient that every effort will be made to promote comfort, dignity and quality of life as defined by the patient.

    • "I know this is not what you wanted to hear."
    • Don't say, "There is nothing more we can do"; instead say, "What we are going to focus on now is ___ (comfort, pain relief, etc.)" [Low Quality Evidence].

    Refer to the original guideline document for additional considerations pertaining to palliative care discussion.

  1. Assess Patient's Palliative Care Needs Based on the Following Domains of Palliative Care

    Recommendations:

    • Clinicians should use a validated assessment tool to assess palliative care needs [Low Quality Evidence, Strong Recommendation] (Moro et al., 2006; Chang, Hwang, & Feuerman, 2000; Phillip et al., 1998).
    • Care conferences with the patient, family and an interdisciplinary team are recommended on an ongoing basis to discuss patient's condition, course of illness, treatment options, goals and plan of care [Low Quality Evidence, Strong Recommendation] (Gries et al., 2008; Moneymaker, 2005; McDonagh et al., 2004; Curtis et al., 2001).

    Perform a thorough assessment based on the domains of palliative care and address needs, values and resources of the patient and family.

    It is important, especially in the development of recommendations for care of patients' palliative care and end-of-life needs, that there is recognition of patient autonomy in choosing care. One goal of this annotation is to discuss how clinicians can create an environment in which the needs of the patient, based on a comprehensive assessment, are fully considered. Only then can a reasonable determination be made of what services are required to meet the physical, psychological, social, cultural, legal/ethical, and spiritual needs of patients and their families. Clinicians recognize that assessment of these domains of care is important to a patient's care but, in a busy practice, may find it difficult to address all domains. The work group recognizes this and suggests that clinicians could incorporate key aspects of palliative assessment with existing assessment processes. They also encourage using a team approach. Routine assessment has been shown to identify symptoms that may otherwise have been overlooked or unreported, facilitate treatment and treatment planning, and enhance patient and family satisfaction.

    For patients to make informed choices regarding palliative care, it is important for both patient and clinicians to have a realistic understanding of the options available. The patient must have the capacity to understand the choices available, especially when some of the choices are not likely to benefit the patient to any great extent. Further, it should be recognized by clinicians and communicated to patients that the realistic choices available for care may change as the patient's medical condition changes. Accordingly, assessment of palliative care needs will necessarily be ongoing and may require at some point, if the patient's decision-making capacity is impaired, the assistance of family or other well-informed surrogates to provide the information needed to assess the patient's ever-changing palliative care needs. The role of a surrogate for assessment of patient condition and expression of patient wishes should be anticipated at the time of initial assessment and care planning. Bringing together, as much as possible, those who may impact decision-making should be integral to the initial plan of care development. Careful clarification for all present at initial care planning will help anticipate and prevent discord as the patient and surrogate(s) make future care choices. The initial meeting for care planning is also useful for identifying availability and limitations of caregivers and other resources for meeting patient needs in implementing the plan of care.

    When discussing goals of care or a patient's end-of-life wishes, the "ask – tell – ask" model provides a useful and effective structure for such conversations. See the original guideline document for specific information on how to utilize this model.

    Patient and family expectations, goals for care and for living (quality of life), understanding of the disease and prognosis, as well as preferences for the type and site of care should be assessed and documented. This assessment needs to be reviewed on a regular basis, with consideration given to the patient's capacity to represent himself/herself. Also see Annotation #10, "Develop or Revise Palliative Care Plan and Establish Goals of Care Through the Process of Shared Decision-Making."

    Among the available assessment tools, it was the decision of this work group to recommend the Edmonton Symptom Assessment System (ESAS) because it is thorough yet simple in clinical application, it has a robust evidence-based foundation for validation in various clinical settings, and is readily available via the Internet.

    As patient and clinician conditions change, there may be need for change of site or clinicians of care. It is helpful in care planning if the community has a uniform system to communicate patient wishes so that the continuity of care makes a smooth transition between clinicians in these circumstances. In this regard, communitywide agreement on recognition of particular advance directive forms and Clinician/Provider Orders for Life-Sustaining Therapy (POLST) enhances the quality of care available. See Annotation #9, "Ethical and Legal Aspects of Care."

    See the Quality Improvement Support "Implementation Tools and Resources Table" section in the original guideline document for the POLST and ESAS Web sites.

    Documentation of the goals of care, patient preferences, and advance directive in an electronic medical record promotes accessibility and portability across care settings.

    Clinicians should be aware of their individual state, provincial or national forms and requirements.

    Care Conferences

    Patient and family meetings or care conferences allow the treatment team an opportunity to meet with the patient and/or family to discuss the patient's diagnosis, condition, course of illness and treatment options and to answer questions and establish both the goals and plan of care. The level of formality of these conferences is likely to vary depending on the focus or goals. These conferences may involve the primary clinician and part of the care team or the entire team.

    Most guidelines for care conferencing are based on expert recommendations. Family counseling literature and studies of giving bad news and end-of-life discussions form the basis for these expert recommendations.

    A step-by-step model for care conferences outlines four goals for a family meeting or conference. These goals focus on:

    • Gaining knowledge of the person experiencing illness and understanding this person's goals
    • Promoting communication between the care team and patient/family
    • Decreasing stress and suffering by reviewing realistic goals and establishing a realistic plan that aligns with these goals
    • Establishing trust and support to work with the patient/family throughout the course of illness

    Incorporating time for this assessment can be done in either the inpatient, outpatient or home settings. In the inpatient setting, this assessment may be done by the palliative care team or by the physician during daily rounds. In the outpatient setting, this assessment can be accomplished over a series of visits or during an extended visit. In the home setting, this can be accomplished in one or more home visits.

  1. Physical Aspects of Care

    Recommendations:

    • The physical aspects of the patient's serious illness should be an integral component of the palliative care plan [Low Quality Evidence, Strong Recommendation].
    • The Choosing Wisely® campaign includes recommendations regarding the care of patients who have a serious illness. See Appendix A, "Choosing Wisely Recommendations Regarding Palliative Care," in the original guideline document.

    The control of physical symptoms is an important part of palliative care. Common symptoms include, but are not limited to, pain, anorexia and cachexia, constipation, delirium, diarrhea, dyspnea and secretion, fatigue, agitation, nausea and vomiting, cough, fever, gastroesophageal reflux disease, hiccups, ascites and pleural effusions, skin and wound care, pruritus, sleep disturbances and insomnia, urinary incontinence and urinary retention.

    Each patient should be frequently evaluated for these issues. Therapy should be individualized for each patient's unique circumstances.

    The work group recognizes that there is not a single order set that covers all patient situations. Multiple sources are available to assist in symptom management. Some possible resources include but are not limited to:

    The Institute for Palliative Medicine: http://www.palliativemed.org External Web Site Policy

    http://www.stoppain.org/palliative_care/content/symptom/pain.asp External Web Site Policy

    Fast Facts: http://www.EPERC.mcw.edu/EPERC/FastFactsandConcepts External Web Site Policy

    Pain

    Control of pain in order to improve quality of life is an important aspect of palliative care. However, the approach toward pain management in palliative care is different from those of chronic pain and acute pain management. While cures of underlying disease may still be possible, they may no longer be the primary goal, because of life-limiting illness. Disease progression may necessitate increased dosing of opioids to control pain; this should not be confused with "tolerance." In fact, when a patient with previously well-controlled pain develops the need for increasing opioid doses to achieve comfort, advancing illness is almost always the cause [Low Quality Evidence].

    Pain is a subjective symptom; there is no test to measure pain. Pain is what the patient says it is, and it needs to be addressed adequately in order to improve quality of life. The patient, along with family members, should be actively involved in establishing the goals of palliative pain management.

    Opioid rotation, especially for patients with cancer, should be considered when opioid side effects are difficult to manage or if inadequate analgesia is present. If symptoms of delirium and confusion are present and are attributable to opioids, a switch to a different opioid may be advisable.

  1. Cultural Aspects of Care

    Recommendations:

    • A cultural assessment should be an integral component of every palliative care plan [Low Quality Evidence, Strong Recommendation] (Smith, Sudore, & Pérez-Stable, 2009; Kemp, 2005; Searight & Gafford, 2005; Kagawa-Singer & Blackhall, 2001).
    • Clinicians should follow the established best practices of utilizing professional medical interpreters when English is not a patient's first language or when there are gaps in understanding English [Low Quality Evidence, Strong Recommendation] (Norris et al., 2005; Searight & Gafford, 2005).

    As palliative care providers, clinicians must evaluate their services, policies and procedures to maximize cultural and linguistic accessibility and responsiveness to changing multicultural populations [Guideline]. Seeking input and integrating changes in how care is delivered are two of the most responsible actions we can do as well-meaning health care providers.

    Core Principles of the Cultural Aspects for Care

    • Culture plays a significant role in shaping the way people make meaning of illness, suffering and dying. Culture helps guide decisions about what kind of care a patient chooses to receive, who it should be provided by and under what conditions. It is important to avoid stereotyping. There are, in fact, wide variations in beliefs, attitudes and behaviors within and between every cultural group [Low Quality Evidence].
    • Literacy plays a critical role in cultural competency. Many individuals do not read or write in their spoken language. Therefore, simply translating materials into another written language is of little value for individuals who have never learned to read or write in their spoken language. Using easily understood videos with clear verbal messages and actions is often more effective when confronting literacy barriers.
    • Among many populations, factors outside of medical technology such as a divine plan and personal coping skills, may be more important for survival than physician intervention [Low Quality Evidence]. Identifying current spiritual or other leaders to help navigate patient/family beliefs and values is often helpful when exploring culture-based decision-making. Conversations with these trusted individuals may help give perspective and bridge gaps in trust between the medical community and the patient/family.

    Guidelines for Multicultural Patient/Family Communications

    The following recommendations are suggested for clinicians in patient/family communications:

    • Use non-verbal forms of education such as drawing, showing pictures or easily understood videos.
    • Understand that not all tools (such as pain scales) are universal and that clinicians should use terms that are culturally relevant.
    • Avoid using jokes or humor because they may be misunderstood or considered offensive.
    • Be sensitive to the roles that gender, age, generation and education play in patient-to-clinician communications.
    • Always ask if there are other family/extended family members who should be included in the conversation. It's important to have the necessary people present in health care discussions.
    • Address adults formally (Mr., Mrs. or Miss) rather than by their first name. This action demonstrates respect. Individuals can later ask you to use their first name if they prefer.
    • Ask open-ended questions that engage and provide clues about patient beliefs and understanding. "Tell me what you believe about your illness" versus "Do you have any questions about your illness?"
    • Review patient education materials for cultural diversity and awareness. Do resources include professionals and persons of color? Are persons of different generations included? Are extended families depicted that include members other than a simplistic "nuclear" family?
    • Address dietary/food preferences.
    • Address preferences regarding physical care of the deceased, including funeral and burial rituals.

    Refer to the original guideline document for guidelines for using professional medical interpreters.

  1. Psychological and Psychiatric Aspects of Care

    Recommendation:

    • A psychological assessment should be an integral component of the palliative care plan [Low Quality Evidence, Strong Recommendation] (Bakitas et al., 2009; Chochinov, 2006; Werth, Gordon, & Johnson, 2002; Block, 2000).

    Routine ongoing assessment of a patient's psychological status is critical to provide quality palliative care.

    Pain and other physical symptoms are commonly the initial focus of treatment. Psychosocial issues are more difficult to evaluate and address if the patient has distressing or poorly controlled physical symptoms [Low Quality Evidence].

    Patients come to advanced illness with issues of worry, insomnia, panic, anxiety, nervousness, paranoia and lack of energy. Psychological symptoms may also present as physical symptoms such as pain, constipation, nausea and vertigo. Difficulty in improving physical symptoms should lead one to look at psychological or other causes. Clinicians must be aware of psychological symptoms of depression and anxiety. Use of standardized assessments to diagnose (e.g., Patient Health Questionnaire [PHQ-9]) may be helpful; however, no screening tool for depression has been validated for palliative care. Questions like "How are you coping?" "What are you doing to cope?" "Are you having trouble thinking?" "Are you depressed?" "Do you think about ending your own life?" or "Do you feel your situation is hopeless?" are good questions. Refer to the NGC summary of the ICSI guideline Adult depression in primary care for more information about depression and the depression assessment tool (PHQ-9).

    Anxiety can contribute to suffering and decreased quality of life. The anxiety may be due to medications, social, psychological or unidentifiable reasons, fears or pain. Anxiety may result in insomnia, gastrointestinal upset, dysphagia, fatigue, palpitations, diaphoresis, fear and isolation, and may escalate as disease progresses. Patients with a history of panic disorder, phobia, obsessive-compulsive disorder or other anxiety disorders will have an increased risk of symptoms of anxiety. Causes of anxiety should be identified and treated if possible. Physical and emotional issues should be addressed. Social and spiritual resources should be utilized. Frank discussions of fears may help alleviate anxiety.

    It is important to differentiate grief from depression. Grieving can be an appropriate response to loss, but persistence of the symptoms mandates consideration of depression. Simply asking a patient, "Are you depressed?" can be a useful screening tool and provides a reasonably sensitive and specific assessment of depression in patients with terminal illnesses. This may be preceded by educating the patient about the difference between clinical depression and appropriate reactive feelings to the situation.

    The clinicians must inquire if the patient is at risk for suicide. There is no evidence that asking the patient about suicide increases the risk that the patient will carry out his or her plan.

    More information can be found in the following Fast Facts at the Web site http://www.eperc.mcw.edu/EPERC/FastFactsIndex External Web Site Policy #07 Depression in Advanced Cancer, #59 Dealing with the Angry Dying Patient, #145 Panic Disorders at the End of Life, and #186 Anxiety in Palliative Care-Causes and Diagnosis provide up-to-date easy to access references for psychological aspects of palliative care.

  1. Social Aspects of Care

    Recommendation:

    • A social assessment should be an integral component of the palliative care plan [Low Quality Evidence, Strong Recommendation] (Gries et al., 2008; Morrison & Meier, 2004; Curtis et al., 2002).

    The comprehensive assessment should include family structure and geographic location; relationships and family dynamics; lines of communication and need for counseling for self and family; existing social and cultural network; perceived social support; medical decision-making/advance directives and quality of life; work and school settings; finances including filing for disability and ability to pay for medications and treatments; sexuality; intimacy; living arrangements; caregiver availability; access to transportation, medications, needed equipment and nutrition; community resources; and legal issues.

    The impact of a chronic progressive disabling disease extends beyond the patient to the "family," defined in its broadest sense. Children, spouses, parents, co-workers, friends, neighbors, employers and even health care clinicians are all affected by an individual patient's condition. Financial concerns, caregiver coping, communication with family and friends and discussion/decision-making on advance treatment plans all fall under the domain of social aspects of care. Lack of knowledge about the social aspects of care influencing the patient can frustrate clinicians regarding decisions or lack thereof that the patient makes. Poor communication among patient, family and clinicians undermines effective decision-making.

    The interdisciplinary team of professionals including social workers should have patient-population specific skills in assessment and development of a social care plan. Often the social worker is involved in coordinating this conference and its attendees. In situations where loved ones are making decisions regarding withdrawal of life support for patients, there are reports that suggest that family members feel more satisfied and supported in the decision-making process where there is a family conference exploring patient's wishes, clinicians' recommendations for withdrawing life support, and assessment of the spiritual care needs of family members. Further information and documents of support can be found at http://www.capc.org/ External Web Site Policy. Also see Annotation #3, "Assess Patient's Palliative Care Needs Based on the Following Domains of Palliative care."

    • Make referrals to meet identified social needs and to remove barriers to care. This includes but is not limited to transportation for treatment and appointments, caregiver service options to meet patient's needs at home, counseling, financial resources and community clubs/services for support.
    • Understand that advance care planning is rarely fixed in time with specific treatment decisions but rather a dynamic process emerging from the clinical context of the disease and the social context of the patient [Low Quality Evidence]. Clear and honest communication, trust over time and working within the patients' most important relationships are needed to improve the quality and outcome of this process.
  1. Spiritual Aspects of Care

    Recommendations:

    • A spiritual assessment should be an integral part of the palliative care plan [Low Quality Evidence, Strong Recommendation] (Post, Puchalski, & Larson, 2000; Puchalski & Romer, 2000; Reed, 1987).
    • Clinicians should utilize clinically trained chaplains as members of the interdisciplinary health care team to provide patient-centered spiritual care and support [Low Quality Evidence, Strong Recommendation] (Zhang, Nilsson, & Prigerson, 2012; Balboni et al., 2007).

    Illness and the prospect of dying can impact the meaning and purpose of a person's life. Thus, illness and dying have a spiritual dimension and are often perceived by patients as spiritual experiences. As people face serious illness or death, they often ask questions of meaning, value and relationships such as:

    Meaning:

    • Why is this happening to me? Why now?
    • What is the meaning of my illness, my suffering, my death?
    • What will happen to me after I die?

    Value:

    • Do I still have value despite changes in my appearance, productivity, independence?
    • Is there anything valuable about me that will persist beyond death?

    Relationships:

    • Do I need to forgive or be forgiven by anyone?
    • Am I loved? By whom?
    • Will I be remembered after I die? Will I be missed?

    Other spiritual issues and concerns encountered in palliative care include life review, assessment of hopes and fears, meaning, purpose, beliefs about afterlife, guilt, forgiveness, legacy, and life completion tasks.

    It is important for clinicians to attend to patients' spirituality, especially any spiritual concerns, questions or distress. Attending to a patient's spirituality can deepen the relationship between patient and clinician and build trust [Low Quality Evidence].

    All palliative care patients should receive a simple spiritual screening on admission. Spiritual screening is a quick determination of a patient's spiritual resources and concerns. Models of spiritual screening use a few simple questions that can be asked in the course of an overall patient and family interview. Examples of such questions include "Are spirituality or religion important in your life?'' and "How well are those resources working for you at this time?'' Based on information from the spiritual screening, clinicians can identify the presence of spiritual issues (including spiritual distress or spiritual resources of strength) and make the appropriate referrals to chaplains in the inpatient setting or to other spiritual care clinicians in an outpatient setting.

    Clinicians can attend to a patient's spiritual needs and concerns in the following ways:

    • Offer compassionate presence—strive to be present with and attentive to patients. Relate to patients not only as a professional expert but also as a fellow human being.
    • Listen to the patient's fears, hopes, pain and concerns—listening is a powerful healing tool.
    • Asking about hope and peace can be a simple, brief, yet effective way to assess spiritual concerns [Low Quality Evidence].

    Utilize clinically trained chaplains as members of the interdisciplinary health care team – chaplains are experts in spiritual care. They offer interfaith support to all who are in need and have specialized education to mobilize spiritual resources to help patients cope more effectively [Low Quality Evidence]. Working with and making referrals to these spiritual care providers are important aspects of holistic care.

    Clinicians should always be respectful of a patient's spiritual beliefs, should keep spiritual discussions patient centered, and should never proselytize or impose beliefs onto a patient.

  1. Ethical and Legal Aspects of Care

    Recommendations:

    • Clinicians should initiate or facilitate advance care planning for all adult patients and their families with regular review as the patient's condition changes [Low Quality Evidence, Strong Recommendation] (Weissman & Meier, 2011; Gries et al., 2008; Balaban, 2000; Block, 2006; Sinclair, 2006; Lee et al., 2002; VandeKieft, 2001).
    • Informed consent should be obtained for any treatment or plan of care from either a patient with decision-making capacity or an appropriate surrogate decision-maker [Low Quality Evidence, Strong Recommendation] (Silveria, Kim, & Langa, 2010; Arnold, 2006).
    • Clinicians should recognize those patients who are receiving non-beneficial, low-yield therapy [High Quality Evidence, Strong Recommendation] (Schneiderman et al., 2003).

    The patient's goals, preferences and choices should form the basis for the plan of care. They should be respected within the limits of applicable state and federal laws. Informed consent for any treatment or plan of care requires a patient with decision-making capacity or an appropriate surrogate decision-maker. Informed consent is based on the principle that patients should be allowed to make decisions for themselves. When a patient lacks this ability, a surrogate is needed.

    Note: Competency is a legal term referring to a decision made by a judge, although a physician's opinion carries a large amount of weight in a competency hearing. In contrast, decision-making capacity (a.k.a., decisional) refers to a clinician's determination, based on clinical examination, whether a patient is able to make medical decisions relative to the discussion for themselves. Most state power of attorney for health care documents require a clinician to document that a patient has lost decision-making capacity for the surrogate to become the legal agent for medical decisions.

    To be deemed decisional, a clinician must be satisfied that a patient is able to:

    • Receive information (e.g., must be awake, but not necessarily oriented)
    • Evaluate, deliberate and mentally manipulate information
    • Communicate a treatment preference (i.e., the comatose patient by definition is not decisional)

    Refer to the original guideline document for more information on decision-making capacity.

    Advance Care Planning

    While the process of advance care planning often results in the completion of a written health care directive, the main focus of advance care planning is on the discussion between the patient and health care agent regarding the patient's wishes. Written advance directives are legal in every state; however, laws and forms vary from state to state. See the "Implementation Tools and Resources Table" in the original guideline document for additional information regarding advance directives. It is important to remember that travelers should be aware of differing laws in whichever state they plan to travel, and bring a copy of their document with them so that they may present their health care directive to a facility where they intend to receive medical care.

    Legal advance directive consists of:

    • Designation of a health care agent (a.k.a., durable power of attorney for health care, health care agent, etc.)—The patient appoints someone to make decisions about his/her medical care if he/she cannot make those decisions. Ongoing communication between the patient and his/her health care agent is imperative so that the agent can participate fully as an advocate when the patient is no longer able to communicate.
    • Writing a formal health care directive—a written document in which a patient's wishes regarding the type or extent of medical treatment to be administered or withheld are described. A Do-Not-Resuscitate (DNR) form is not a sufficient health care directive. A health care directive goes into effect only when the patient becomes unable to communicate his/her preferences.

    There are programs designed to support and spread the use of advanced care planning [High Quality Evidence]. See the Implementation Tools and Resources Table in the original guideline document for more information.

    POLST is designed as a communication tool to translate the patient's advance care plan into clinician orders that clinicians (including emergency medical technicians [EMTs], emergency room [ER] staff and hospitalists) can follow in emergencies and review with patients and families at transitions of care. It is becoming more widespread in its acceptance in many parts of the country and has been translated into several languages. POLST was developed as advance care planning document, to be completed by health care professionals, together with a patient or surrogate decision-maker. The actual form should consist of these sections:

    • Resuscitation decision
    • Medical intervention decisions
    • Antibiotics
    • Medically administered nutrition
    • Signatures from the clinician, and if possible, the patient/surrogate

    [Guideline]

    The major advantages of the POLST form over standard advance directives is that, when adopted as the community standard, the information is clear, unambiguous, flexible, portable, available across all sites of care, and more likely to be honored by all clinicians when needed (http://www.polst.org External Web Site Policy). The Minnesota Medical Association has adopted a version of POLST for statewide use (http://www.mnmed.org/portals/mma/pdfs/polstform.pdf External Web Site Policy).

    Barriers to completing advance directives:

    • Many clinicians believe it is not appropriate to begin advance directive planning on an outpatient basis. In reality, multiple studies have shown that patients want their clinicians to discuss advance care planning with them before they become ill. Many others have shown a positive response from patients when advance directive discussions are held during outpatient visits.

      Overcoming this barrier: When beginning a discussion of advance care planning, simply ask, "Do you know what an advance directive is? Do you have one?" If you are afraid the patient may respond negatively, perhaps saying to you, "Is there something wrong with me? Am I sicker than you are letting on?" respond by saying, "I ask all of my patients this question, sick or well." The Patient Self-Determination Act of 1991 mandates that every person be asked about advance directives when first seen (inpatient and outpatient).

    • Many people believe that if a loved one has financial power of attorney, he/she doesn't need a separate medical power of attorney. This is not true. Most often these are separate legal roles.

      Overcoming this barrier: When discussing power of attorney with your patient, assess his/her understanding. Have literature in your office to clear up discrepancies.

    • Many clinicians and patients feel that having an advance directive means "Don't treat." Unfortunately, advance directives can be a trigger for disengagement by the clinicians.

      Overcoming this barrier: Make sure your patient and staff understand that advance directives don't mean "Don't treat me" but instead "Treat me the way I want to be treated."

    • Patients often fear that once a person names a proxy in an advance directive he/she loses control of his/her own care.

      Overcoming this barrier: When explaining advance directives to your patients, make sure he/she understands that as long as he/she retains decision-making capacity, he/she retains control of his/her medical destiny. Advance directives become active only when a person cannot speak for himself or herself.

    • Many people believe that only elderly people need advance directives.

      Overcoming this barrier: The stakes may actually be higher for younger people if tragedy strikes. Use the example of the Terry Schiavo case (a young person who had a tragic accident and left in a vegetative state with no directives) as a trigger to enlighten the discussion. Ask "What would you want if you were in a similar situation?"

    [Guideline]

    Refer to the original guideline document for information on eliciting values and non-beneficial/low-yield therapy (formerly named medical futility).

  1. Develop or Revise Palliative Care Plan and Establish Goals of Care Through the Process of Shared Decision-Making

    See Appendix B in the original guideline document for the ICSI Shared Decision-Making Model.

    Recommendation:

    • Clinicians should engage in shared decision-making with the patient and/or their families when establishing or revising goals of care [Low Quality Evidence, Strong Recommendation].

    When shared decision-making and collaborative conversations are used with patients and their families, the following will occur:

    • Prognosis, goals of plan of care, and advanced care planning are discussed.
    • Patient/family knows the plan of care.
    • Patient is provided optimal medical management.
    • Care plan has prepared for changes.
    • Patient/family knows point person(s).
    • Patient/family discusses options.
    • Patient is prepared for final days.
    • Hospice, other options are discussed.

    Use shared decision-making when developing or revising the plan or care. Shared decision-making promotes collaboration between the clinician and patient in making treatment decisions, where the clinician shares information and knowledge about the treatment options and the patient uses his/her values to weigh the risks and benefits of the different care options. Note that this does not preclude the clinician making a strong treatment recommendation based on clinical knowledge and experience. However, level of interest in medical information tends to be stronger with younger age and increased educational attainment; older patients may prefer less information and want to rely more on the clinician's expertise alone. More acutely ill patients may have limited ability to successfully weigh risks and benefits of the different options and thus may rely more on family members or on the clinician's recommendation. This underscores the need to individualize care option discussions to patient preferences and illness status. Discussions on treatment preferences should be periodically revisited to account for changes in patient preferences and course of illness, especially given that treatment strategies at one stage of the illness may be inappropriate for another stage. Also see Annotation #3, "Assess Patient's Palliative Care Needs Based on the Following Domains of Palliative Care."

    Although patients and family members should have a say in treatment options, the clinician should make a clear recommendation based on his/her expertise and experience. It is important that the patient does not feel rushed into deciding between treatment options, as he/she may need to digest the initial bad news first [Low Quality Evidence].

  1. Does Patient Meet Hospice Criteria?

    Hospice care, now available in most communities in the United States, offers palliative medical care from a multidisciplinary team and serves patients and families as a unit with emotional, social and spiritual support.

    Medicare patients certified by their physician as terminally ill with a life expectancy of six months or less may elect to receive hospice care. Most private insurances now have hospice benefits, although coverage may vary.

    Discharge from hospice occurs if prognosis improves or if the patient wishes to seek curative treatment.

    A patient may be readmitted at any time, as long as the criteria for hospice are met.

    See Appendix D, "Medicare Hospice Benefit: Eligibility and Treatment Plan," in the original guideline.

  1. Hospice Care Team Coordinates Palliative Care Plan with Primary Clinician

    Although the palliative care model encompasses hospice care (see diagram in the Introduction section of the original guideline document), it is beyond the scope of this guideline to include all aspects of care once the patient is admitted to hospice. See Appendix D, "Medicare Hospice Benefit: Eligibility and Treatment Plan," in the original guideline.

  1. Remission or Resolution of Disease?

    While palliative care is delivered across care settings and throughout the full course of illness, a patient may no longer require focused palliative care when:

    • There is a remission of symptoms and the illness is no longer progressing
    • The disease process is resolved (cured)

    If symptoms recur or the patient's condition deteriorates, a new evaluation of the patient's palliative care needs should be done.

  1. Patient Is Actively Dying

    Recommendations:

    • Clinicians should discuss the likelihood of disease progression to death with patients and/or their families [Low Quality Evidence, Strong Recommendation] (Lamont & Christakis, 2001; Brody et al., 1997; "A controlled trial," 1995).
    • Clinicians should engage in ongoing communication with the patient and/or family regarding the dying process and the treatment plan [Low Quality Evidence, Strong Recommendation].

    This portion of the guideline is meant to aid clinicians in identifying those patients actively dying.

    Diagnosing dying is complex and at times, uncertain. Agreement between care team members that the patient is dying, and communicating this to the patient and family fosters trust and improves satisfaction.

    Care of the actively dying patient requires an intensive plan of care. Essential to this plan is recognition of the dying patient. The plan must be medically sound and concordant with the patient's wishes and values. Despite barriers, it is important to have this plan available at the point of care, regardless of the site of care (inpatient, long-term care, home care, assisted living, ED, etc.) [Low Quality Evidence].

    Attention to adequate symptom management allays fears and allows comfort during the dying process. There are several example order sets and nursing care plans on the Center to Advance Palliative Care (CAPC) Web site: http://www.capc.org/ External Web Site Policy

    Also see Annotation #4, "Physical Aspects of Care."

    The plan of care should include education for the patient and family. This education should include the signs and symptoms of imminent death. Attention to developmental, cultural and religious needs is critical. Ongoing communication remains key.

    The following signs and symptoms may indicate that death is approaching. Not all individuals will show all of these signs; however, these are signs that death is likely to occur in hours to days.

    • Delirium, often manifested by increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently.
    • Withdrawal from active participation in social activities
    • Increased periods of sleep, lethargy
    • Decreased intake of food and liquids
    • Periods of pausing in breathing (apnea) whether awake or sleeping. Very rapid breathing or cyclic changes in the patterns of breathing (Cheyne-Stokes respirations). Other abnormal breathing patterns.
    • Patient reports seeing persons who have already died.
    • Patient states that he or she is dying.
    • Patient requests family visit to settle unfinished business and tie up loose ends.
    • Inability to heal or recover from wounds or infections
    • Increased swelling (edema) of either the extremities or the entire body
    • Inability to arouse patient at all (coma) or ability to arouse patient only with great effort, but patient quickly returns to severely unresponsive state (semicoma)
    • Severe agitation in patient, hallucinations, acting "crazy" and not in patient's normal manner or personality
    • Increased respiratory congestion or fluid buildup in the lungs. Shortness of breath.
    • Inability to swallow any fluids at all. Not taking food by mouth. Vomiting.
    • Patient breathing through wide open mouth continuously and no longer can speak even if awake.
    • Urinary or bowel incontinence in a patient who was not incontinent before
    • Marked decrease in urinary output and darkening color of urine or very abnormal color of urine, such as red or brown
    • Blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 to 30 point drop)
    • Systolic blood pressure below 70. Diastolic blood pressure below 50.
    • Patient's extremities feel very cold to the touch.
    • Fever
    • Patient complains that his or her legs/feet are numb and cannot be felt at all.
    • Cyanosis, or a blue or purple coloring to the patient's arms and legs, especially the hands and feet (mottling).
    • Patient's body is held in a rigid unchanging position.
  1. Death and Bereavement

    Grief is the normal, expected emotional suffering caused by a significant loss, such as the death of a loved one, that includes both physiologic and psychological reactions [Low Quality Evidence]. Grief can be anticipatory, such as that experienced by the patient or a loved one prior to the expected death of the patient [Guideline]. Grief can also be complicated, leading to maladaptive behaviors associated with a distorted or prolonged grief period [Low Quality Evidence]. Grief following a death is called bereavement. However, bereavement interventions can begin prior to and in anticipation of the actual loss [Low Quality Evidence].

    Clinicians play an important role in facilitating healthy grief and bereavement processes. Honesty at the end of life is essential. By avoiding mixed messages, patients may review their lives and assist loved ones in future plans. At this time it may be possible to identify bereavement needs of patients and their loved ones. By assessing the grief response prior to death, it is possible to identify risk of complicated grieving and provide early intervention [Low Quality Evidence].

    Following the death of the patient, it is essential to allow the patient's loved ones to perform any customs or rituals that are important to them, within the policy guidelines of the facility. Failure to do so may lead to complicated grieving [Low Quality Evidence]. Clinicians should be available to answer questions and offer support. This may be done informally or through a formal debriefing.

    Contact by clinicians after the death of a patient can be comforting for the patient's loved ones [Low Quality Evidence]. Clinicians may wish to offer emotional support by sending a card expressing their condolences. Clinicians should also offer practical support by completing death certificates in a timely manner, filling out necessary forms or writing letters for the family as needed.

    Several models defining grief are available, yet it is important to note that progress through grief is not predictable. Movement through grief varies from person to person, and the bereaved may vacillate between stages, or elements of stages may appear concurrently. Grief is not on a linear continuum and does not follow a specific time frame. In complicated grieving, the person may fail to progress through grief or may be "stuck" in one stage of the grief process.

    Several factors may predispose an individual to complicated grief. These include:

    • Dependent or ambivalent relationship
    • Multiple previous bereavements
    • Previous psychiatric history, especially depression
    • Sudden and unexpected death
    • Death of a young person
    • Stigmatized deaths such as suicide or acquired immunodeficiency syndrome (AIDS)
    • Culpable deaths
    • Inability to carry out valued religious rituals
    • Lack of social support
    • Survivor under age 45 whose partner died suddenly, or over 65 whose partner had illness of five years or more
    • Multiple life crises
    • Gender of bereaved person (e.g., elderly male widower)

    [Low Quality Evidence]

    Others who are vulnerable to complicated grief include children, confused elders and those with learning disabilities. Many resources are available for children, including storybooks, workbooks and a regional camp for grieving children. For confused elders or survivors with learning disabilities, repeated explanations and participation in important events, such as the funeral, may decrease the repetitious questions about the deceased [Low Quality Evidence].

    In order to provide support through the first anniversary of the death, it is suggested that the length of follow-up with the bereaved is a minimum of thirteen months [Low Quality Evidence]. Although it is not realistic for clinicians to personally provide bereavement services for the grieving loved ones of a patient, it is imperative that each clinician be aware of the needs of the bereaved, potential risk factors for complicated grieving and the services available within their area so that appropriate referrals can be made to promote healthy grieving. Possible community services include pastoral care, support groups, counseling services, grief groups, bereavement follow-up programs and communities of faith. A referral to social services or contacting a local hospice program may be appropriate for assistance in bereavement interventions.

Definitions:

Quality of Evidence and Strength of Recommendations

Category Quality Definitions Strong Recommendation Weak Recommendation
High Quality Evidence Further research is very unlikely to change confidence in the estimate of effect. The work group is confident that the desirable effects of adhering to this recommendation outweigh the undesirable effects. This is a strong recommendation for or against. This applies to most patients. The work group recognizes that the evidence, though of high quality, shows a balance between estimates of harms and benefits. The best action will depend on local circumstances, patient values or preferences.
Moderate Quality Evidence Further research is likely to have an important impact on confidence in the estimate of effect and may change the estimate. The work group is confident that the benefits outweigh the risks, but recognizes that the evidence has limitations. Further evidence may impact this recommendation. This is a recommendation that likely applies to most patients. The work group recognizes that there is a balance between harms and benefit, based on moderate quality evidence, or that there is uncertainty about the estimates of the harms and benefits of the proposed intervention that may be affected by new evidence. Alternative approaches will likely be better for some patients under some circumstances.
Low Quality Evidence Further research is very likely to have an important impact on confidence in the estimate of effect and is likely to change. The estimate or any estimate of effect is very uncertain. The work group feels that the evidence consistently indicates the benefit of this action outweighs the harms. This recommendation might change when higher quality evidence becomes available. The work group recognizes that there is significant uncertainty about the best estimates of benefits and harms.
Clinical Algorithm(s)

A detailed and annotated clinical algorithm titled "Palliative Care for Adults" is provided in the original guideline document External Web Site Policy.

Evidence Supporting the Recommendations

References Supporting the Recommendations
Type of Evidence Supporting the Recommendations

The type of supporting evidence is classified for selected recommendations (see the "Major Recommendations" field).

Benefits/Harms of Implementing the Guideline Recommendations

Potential Benefits

Appropriate use of palliative care in patients with potentially life-limiting, life-threatening, or chronic progressive illnesses

Potential Harms
  • Advance directives can be a trigger for disengagement by the medical staff.
  • Opioid rotation, especially for patients with cancer, should be considered when opioid side effects are difficult to manage or if inadequate analgesia is present. If symptoms of delirium and confusion are present and are attributable to opioids, a switch to a different opioid may be advisable.

Qualifying Statements

Qualifying Statements
  • The information contained in this Institute for Clinical Systems Improvement (ICSI) Health Care Guideline is intended primarily for health professionals and other expert audiences.
  • This ICSI Health Care Guideline should not be construed as medical advice or medical opinion related to any specific facts or circumstances. Patients and families are urged to consult a health care professional regarding their own situation and any specific medical questions they may have. In addition, they should seek assistance from a health care professional in interpreting this ICSI Health Care Guideline and applying it in their individual case.
  • This ICSI Health Care Guideline is designed to assist clinicians by providing an analytical framework for the evaluation and treatment of patients, and is not intended either to replace a clinician's judgment or to establish a protocol for all patients with a particular condition.

Implementation of the Guideline

Description of Implementation Strategy

Once a guideline is approved for general implementation, a medical group can choose to concentrate on the implementation of that guideline. When four or more groups choose the same guideline to implement and they wish to collaborate with others, they may form a guideline action group.

In the action group, each medical group sets specific goals they plan to achieve in improving patient care based on the particular guideline(s). Each medical group shares its experiences and supporting measurement results within the action group. This sharing facilitates a collaborative learning environment. Action group learnings are also documented and shared with interested medical groups within the collaborative.

Currently, action groups may focus on one guideline or a set of guidelines such as hypertension, lipid treatment, and tobacco cessation.

Implementation Recommendations

Prior to implementation, it is important to consider current organizational infrastructure that address the following:

  • System and process design
  • Training and education
  • Culture and the need to shift values, beliefs and behaviors of the organization

The following system changes were identified by the guideline work group as key strategies for health care systems to incorporate in support of the implementation of this guideline.

  • Develop a process to provide education to clinicians, patients, and families regarding the elements and appropriateness of palliative care. It is important to address the difference between palliative care and hospice.
  • Develop a process that will allow clinicians to identify and assess patients who would benefit from palliative care services. This process should include the use of a screening tool that utilizes the domains of palliative care.
  • Develop scripts for clinicians that will assist them in initiating and discussing palliative care services.
  • Develop a process for timely referral to palliative care consultation for patients with a serious illness.
Implementation Tools
Clinical Algorithm
Quick Reference Guides/Physician Guides
Resources
For information about availability, see the Availability of Companion Documents and Patient Resources fields below.
Related NQMC Measures

Institute of Medicine (IOM) National Healthcare Quality Report Categories

IOM Care Need
End of Life Care
Living with Illness
IOM Domain
Effectiveness
Patient-centeredness

Identifying Information and Availability

Bibliographic Source(s)
McCusker M, Ceronsky L, Crone C, Epstein H, Greene B, Halvorson J, Kephart K, Mallen E, Nosan B, Rohr M, Rosenberg E, Ruff R, Schlecht K, Setterlund L. Palliative care for adults. Bloomington (MN): Institute for Clinical Systems Improvement (ICSI); 2013 Nov. 81 p. [92 references]
Adaptation

Not applicable: The guideline was not adapted from another source.

Date Released
2007 Jan (revised 2013 Nov)
Guideline Developer(s)
Institute for Clinical Systems Improvement - Nonprofit Organization
Guideline Developer Comment

The Institute for Clinical Systems Improvement (ICSI) is comprised of 50+ medical group and hospital members representing 9,000 physicians in Minnesota and surrounding areas, and is sponsored by five nonprofit health plans. For a list of sponsors and participating organizations, see the ICSI Web site External Web Site Policy.

Source(s) of Funding
  • The Institute for Clinical Systems Improvement (ICSI) provided the funding for this guideline. The annual dues of the member medical groups and sponsoring health plans fund ICSI's work. Individuals on the work group are not paid by ICSI, but are supported by their medical group for this work.
  • ICSI facilitates and coordinates the guideline development and revision process. ICSI, member medical groups, and sponsoring health plans review and provide feedback, but do not have editorial control over the work group. All recommendations are based on the work group's independent evaluation of the evidence.
Guideline Committee

Committee on Evidence-Based Practice

Composition of Group That Authored the Guideline

Work Group Members: Martha McCusker, MD, FACP (Work Group Leader) (Hennepin County Medical Center) (Internal Medicine/Geriatrics); Becky Nosan, NP (Allina Medical Clinic) (Family Medicine/Palliative Care); Erin L. Rosenberg, LICSW (Allina Medical Clinic) (Social Worker); Joe Halvorson, RN (Essentia Health) (Nursing); Lyn Ceronsky, DNP, GNP-BC, FPCN (Fairview Health Services) (Family Medicine/Geriatrics); Ken Kephart, MD (Fairview Health Services) (Family Medicine/Geriatrics); Mabel Rohr, CNP (HealthPartners Medical Group) (Family Medicine/Geriatrics); Rob Ruff, BCC (HealthPartners Regions Hospital) (Chaplain); Chuck Crone (Patient Representative); Barbara Greene (Twin Cities Medical Society) (Cultural Care); Kristina Schlecht, MD (University of North Dakota Center for Family Medicine); Howard Epstein, MD, FHM (Institute for Clinical Systems Improvement) (Chief Health Systems Officer); Emily Mallen, MBA (Institute for Clinical Systems Improvement) (Project Manager) Linda Setterlund, MA, CPHQ (Institute for Clinical Systems Improvement) (Facilitator)

Financial Disclosures/Conflicts of Interest

The Institute for Clinical Systems Improvement (ICSI) has long had a policy of transparency in declaring potential conflicting and competing interests of all individuals who participate in the development, revision and approval of ICSI guidelines and protocols.

In 2010, the ICSI Conflict of Interest Review Committee was established by the Board of Directors to review all disclosures and make recommendations to the board when steps should be taken to mitigate potential conflicts of interest, including recommendations regarding removal of work group members. This committee has adopted the Institute of Medicine Conflict of Interest standards as outlined in the report Clinical Practice Guidelines We Can Trust (2011).

Where there are work group members with identified potential conflicts, these are disclosed and discussed at the initial work group meeting. These members are expected to recuse themselves from related discussions or authorship of related recommendations, as directed by the Conflict of Interest committee or requested by the work group.

The complete ICSI policy regarding Conflicts of Interest is available at the ICSI Web site External Web Site Policy.

Disclosure of Potential Conflicts of Interest

Lyn Ceronsky, DNP, CHPCA, GNP-BC (Work Group Member)
Director, Palliative Care, Fairview Health Services
National, Regional, Local Committee Affiliations: CAPC Advisory Council, MN Network Hospice and Palliative Care, National Board Certification Hospice and Palliative Nursing
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: Paid consultant to Stratis Health and CAPC

Howard Epstein, MD, FHM (Work Group Member)
Chief Health Systems Officer, Institute for Clinical Systems Improvement (ICSI)
National, Regional, Local Committee Affiliations: Board of Directors, Society of Hospital Medicine; Board of Directors and Executive Council of Minnesota Network of Hospice and Palliative Care
Guideline Related Activities: None
Research Grants: Primary investigator for a Choosing Wisely® grant from the ABIM Foundation
Financial/Non-Financial Conflicts of Interest: None

Barbara Greene, MPH (Work Group Member)
Director of Community Engagement, Honoring Choices Minnesota, Twin Cities Medical Society
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Joe Halvorson, RN (Work Group Member)
Nurse, Essentia Health
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Ken Kephart, MD (Work Group Member)
Medical Director, Fairview Senior Services, Fairview Health Services
National, Regional, Local Committee Affiliations: Board member of Twin Cities Medical Society
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: Paid consultant to Honoring Choices Minnesota

Martha McCusker, MD (Work Group Leader)
Physician, Internal Medicine, Geriatrics, Hospice and Palliative Care, Hennepin County Medical Center
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Becky Nosan, NP (Work Group Member)
Nurse Practitioner, Gerontology/Palliative, Allina Medical Clinic
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Mabel Rohr, RN, CNP (Work Group Member)
Geriatric Nurse Practitioner, Internal Medicine/Geriatrics, HealthPartners Medical Group
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: Received honoraria for teaching geriatric education at Augsburg College and MN Critical Care Nurses Association

Erin Rosenberg, LICSW (Work Group Member)
Clinical Manager, Social Worker, LifeCourse, Allina Health
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Rob Ruff, BCC (Work Group Member)
Director, Chaplaincy Services, HealthPartners Regions Hospital
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Kristina Schlecht, MD (Work Group Member)
Associate Director, Family Practice, University of North Dakota Center for Family Medicine
National, Regional, Local Committee Affiliations: None
Guideline Related Activities: None
Research Grants: None
Financial/Non-Financial Conflicts of Interest: None

Guideline Status

This is the current release of the guideline.

This guideline updates a previous version: Institute for Clinical Systems Improvement (ICSI). Palliative care. Bloomington (MN): Institute for Clinical Systems Improvement (ICSI); 2011 Nov. 62 p.

Guideline Availability

Electronic copies: Available from the Institute for Clinical Systems Improvement (ICSI) Web site External Web Site Policy.

Print copies: Available from ICSI, 8009 34th Avenue South, Suite 1200, Bloomington, MN 55425; telephone, (952) 814-7060; fax, (952) 858-9675; Web site: www.icsi.org External Web Site Policy; e-mail: icsi.info@icsi.org.

Availability of Companion Documents

The following is available:

Print copies: Available from ICSI, 8009 34th Avenue South, Suite 1200, Bloomington, MN 55425; telephone, (952) 814-7060; fax, (952) 858-9675; Web site: www.icsi.org External Web Site Policy; e-mail: icsi.info@icsi.org.

In addition, various resources, including the Choosing Wisely recommendations regarding palliative care, the ICSI shared decision-making model, special considerations for pediatric patients, and Medicare hospice benefit information, are available in the appendices of the original guideline document External Web Site Policy.

Patient Resources

None available

NGC Status

This NGC summary was completed by ECRI on April 4, 2007. This summary was updated by ECRI Institute on July 9, 2007, following the FDA advisory on erythropoiesis stimulating agents. This summary was updated by ECRI Institute on October 2, 2007, following the U.S. Food and Drug Administration (FDA) advisory on Haloperidol. This summary was updated by ECRI Institute on November 6, 2007, following the U.S. Food and Drug Administration advisory on Provigil (modafinil) Tablets. This summary was updated by ECRI Institute on November 9, 2007, following the U.S. Food and Drug Administration advisory on Antidepressant drugs. This summary was updated by ECRI Institute on March 21, 2008 following the FDA advisory on Erythropoiesis Stimulating Agents. This summary was updated by ECRI Institute on July 23, 2008. This summary was updated by ECRI Institute on April 1, 2009 following the FDA advisory on Reglan (metoclopramide). This summary was updated by ECRI Institute on May 1, 2009 following the U.S. Food and Drug Administration advisory on antiepileptic drugs. This summary was updated by ECRI Institute on September 30, 2009, following the U.S. Food and Drug Administration advisory on Phenergan (promethazine hydrochloride). This summary was updated by ECRI Institute on August 2, 2010. This summary was updated by ECRI Institute on May 20, 2011 following the U.S. Food and Drug Administration advisory on antipsychotic drugs. This NGC summary was updated by ECRI Institute on May 25, 2012. This NGC summary was updated by ECRI Institute on February 20, 2014. This summary was updated by ECRI Institute on June 2, 2016 following the U.S. Food and Drug Administration advisory on Opioid pain medicines.

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