End-of-Life Care

Educational Objectives

The goal of this program is to improve the awareness of current practice for palliative care and hospice. After hearing and assimilating this program, the clinician will be better able to:

1. Define concurrent care and describe the objectives of palliative care.
2. Explain the Medicare hospice benefit.
3. Use symptoms and signs to predict poor prognosis.
4. Identify key assessments and treatments used in the management of the imminently dying patient.

Summary

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End-of-Life Care

Russell Portenoy, MD, Professor of Neurology and Family and Social Medicine, Albert Einstein College of Medicine, Executive Director of the MJHS Institute for Innovation in Palliative Care, and Chief Medical Officer of MJHS Hospice and Palliative Care, New York, NY

End-of-life care: from clinical perspective, better to describe 2 broad areas, caring for patients with advanced illness and caring for patients imminently dying from advanced disease; in care of patients with advanced illness, key task, optimize concurrent care (ie, providing palliative care related to symptom control and other factors that undermine quality of life [QoL] for patient or family while managing patient’s disease processes through antineoplastic therapies); in care of imminently dying, key task, to optimize palliative care (sometimes called comfort care to emphasize focus on symptom control and relief of other problems that undermine QoL or enhance suffering of patient and family)

Palliative care: multiple definitions of palliative care, supportive care, and hospice; terms sometimes used interchangeably, although, in United States (US), tend to have different meanings; supportive care — tends to be used mostly in oncology practice; focuses on management of problems related to antineoplastic therapies and other issues such as family support; palliative care — international movement that focuses on management of factors that contribute to illness burden of patients or families; may be viewed as broader construct within which supportive care more narrowly defined term; hospice and palliative care often used interchangeably (international perspective); hospice — in US, government-supported program to provide specialist palliative care to eligible patients with advance illness

Definition of palliative care: promoted by World Health Organization and American Society of Clinical Oncology (ASCO); best understood as multiprofessional therapeutic approach appropriate for all populations with serious, chronic illnesses, with overarching goal to prevent or manage suffering and illness burden of both patient and family from time of diagnosis onward; patient and family should be considered unit of care; any factor that contributes to burden of illness for patient or family may be considered for palliative care intervention to prevent or manage these sources of illness burden; begins at time of diagnosis and needs to intensify as sources of illness burden multiply; physicians, nurses, social workers, chaplains, pharmacists, psychologists, various therapists, all individuals whose profession includes management of sources of illness burden participate

Palliative care goals: work in the US during past 25 yrs moved from broad definition of palliative care to bedside practices that promote relief of suffering and illness burden, and that maintain or improve QoL of patients and families

Clinical objectives: reduce stress from physical, psychosocial, or spiritual sources; enhance patient and family self-efficacy, coping and adaptation, and family cohesion; ensure therapies offered only if medically appropriate, likely to yield benefits greater than adverse effects, and consistent with patient’s or family’s preferences and goals; support informed medical decision making, goal setting, and advanced care planning consistent with patient’s capabilities, preferences, and culture; from practical perspective, palliative care coordinates work of professional caregivers to reduce care fragmentation and ease care transitions; provides needed services; supports effective communication within family and between family and professional caregivers; ensures culturally sensitive, ethical, and legal care; provides care that prepares for dying process, minimizes distress during active dying, and offers support during period after death, including longer-term support for bereaved, palliative care not same as end-of-life care; begins at time of diagnosis

Generalist vs specialist palliative care: generalist palliative care — those interventions provided by clinicians with no specific identity as palliative care providers or specialists, but professionals who have competencies in treatments that address some objectives; specialist palliative care– reflects those interventions by clinicians who have specialist-level competencies in treatments that address objectives of palliative care; they contribute to more comprehensive approach to illness burden associated with serious illness; in US, specialist-level certification available for physicians, nurses, nurse practitioners, social workers, and chaplains; in US, have been effective in implementing this construct of specialist palliative care that involves education and experience that supports professional’s high-level competencies in addressing important issues in illness burden; all clinicians who address sources of illness burden throughout course of illness engage in generalist-level palliative care; generalist-level palliative care practiced by all clinicians who address needs of patients with serious illness; specialists in palliative care typically involve individual or team that addresses more complex problems and works together; specialists usually called upon to take care of patients with advanced illness and short prognosis; specialists in palliative care, including those who work in hospice agencies, care for dying patients, but construct of palliative care as care model needs to be understood as starting from time of diagnosis going forward

Importance of palliative care: addresses 2 major problems associated with serious illness, particularly when progressive and prognosis short

High burden of illness: can be related to medical factors, care fragmentation and disparities, misaligned incentives in health system, and numerous patient factors (eg, type of illness, tempo or progression of illness, family’s ability family to cope and adapt to problems associated with illness)

High cost of care related to partly avoidable expenses: ~5% of patients in US account for ~50% of health care costs (~11% of that for care in last year of life); patients with advanced illness and high illness burden account for disproportionate share of health care spending; reduction in health care spend not specific objective of palliative care, but may be considered epiphenomenon; occurs in patients getting good palliative care because it focuses on iterative goal setting and serious illness discussions; serious illness discussions — allow patients to make decisions about care they receive consistent with values and preferences, and reflect informed, shared decision making; process needs to be done with oncologists because some patients will elect less-aggressive care or will not be offered highly aggressive care when clear that likelihood of benefit, in terms of value outcomes for individual patient, not possible; some patients who need very intensive palliative care high-cost patients; in aggregate, patients with serious illness who get good palliative care throughout course of illness tend to cost less than patients who do not; palliative care addresses both high burden of illness and high cost of care related to serious illness

Other factors: patients who have prognostic awareness, especially those who have completed advance directives >30 days before death, die less often in hospital and use hospice care more and for longer durations; these changes impact both quality and cost of care; patients who have end-of-life discussions also more likely to be satisfied; typically die at place of their choosing and relatives or caregivers less distressed after their death; those who had access to palliative care consultation services have less symptom and psychological distress, and caregivers generally less distressed; patients with access to specialist-level palliative care and hospice do not die earlier; studies suggest that good palliative care prolongs survival; those with access have shown lower or equal cost to those who do not receive it

American Society of Clinical Oncology (ASCO) guideline: supportive of need for palliative care services for patients with cancer; recognizes importance of generalist-level palliative care provided by oncology practice and specialist care provided by referral to palliative care team; for newly diagnosed patients, early palliative care involvement within 8 wks of diagnosis highly suggestive (based on intermediate quality of evidence; strength of recommendation moderate and mostly from informal consensus); recommendation viewed as evolving best practice that patients likely to have prolonged course (eg, metastatic disease) should have palliative care involvement; patients with advanced cancer should be referred, if possible, to interdisciplinary palliative care team that can provide in- or outpatient care, at any point during course of illness, alongside active cancer treatment (evidence for this recommendation intermediate in strength, but strength of recommendation strong); if you have patient with progressive illness and access to interdisciplinary palliative care consultation program, ASCO guideline recommends referral; do not wait until patient’s prognosis poor, life expectancy considered to be days or weeks, or cancer treatment no longer option; refer early so concept of concurrent care can be executed

8 domains of palliative care: expert panel published in the National Consensus Project for Best Practices in Palliative care, revised and republished by National Coalition for Hospice and Palliative Care (www.nationalcoalitionhpc.org); domains reflect widely accepted set of best practices

Physical aspects of care, or interventions for physical well-being: includes assessment and management of pain, symptoms other than pain, and other physical disorders that may produce distress (eg, pressure ulcers or delirium); more specific focus on physical aspects of pain consists of assessment of pain and other symptoms or disorders that can undermine physical well-being; this practice reflects generalist-level palliative care approach

Psychological and psychiatric aspects of care: focuses on assessment and management of illness-related psychological reactions (eg, mood disturbance, impairment in coping or adaptation to disease, grief reactions); assessment and management of comorbid psychiatric disorder, including axis 1 (eg, anxiety disorder, bipolar disease, substance use disorders, psychotic disorders, personality disorders) and axis 2 diagnoses; may require referral to mental health professionals

Social aspects of care: includes assessment and management of social needs, including financial resources and maintenance of social networks; addresses family integrity, involving communication within family and between family and professionals, family coping, and role functioning within family; oncologists may make referrals to address processes that can undermine social well-being

Spiritual, religious, and existential aspects of care: often defined in terms of disturbances in meaning and purpose, disturbances in sense of connectedness patients may feel with others or with other groups, connection patient feels to his or her faith and religion, and potentially, type of connection patient may feel in trying to achieve some type of transcendence; meaning and purpose, interconnected faith and religion, and transcendence key constructs; oncologists may not be able to provide spiritual care patient may need; rely on patient’s religious connections or make referral to health care chaplain; spiritual distress important source of illness burden, relatively common in patients with serious chronic illness, and assessment may indicate patient expressing sense of emptiness because meaning in life has become impaired by necessity of living with illness; raise concern that patient experiencing level of spiritual distress that can impact QoL, increase suffering of patient and family, and can potentially be addressed through intervention

Ethical and legal aspects of care: all practice must be ethical and comply with appropriate law; important ethical and legal implications with advanced illness; think about nature of consent for medical care when patient lacks ability for decisional capacity; issues related to withholding or withdrawing life-sustaining therapy at end of life need understanding of ethical basis and potential legal implications; issues may be addressed by referral to ethics committee; some challenging practices within palliative care (eg, use of palliative sedation for refractory suffering at end of life); palliative sedation — use of sedative-hypnotic drug to induce sleep-like state in effort to reduce suffering; can potentially hasten death, and question of whether clinician can engage in therapy that has this known risk if intent to reduce suffering; ethical principles of proportionality and double effect can guide clinical practice and allow clinicians with skills in palliative sedation to use it; palliative sedation now widely accepted technique worldwide; organ donation after cardiac death has important legal and ethical implications

Care of patients at the end of life: includes ability to prognosticate imminently dying patient, to communicate about likelihood of death with family members and other care providers, and management of symptoms or signs associated with dying

Structures and processes of care: refers to variety of factors that may improve ability to provide palliative care to patients with serious illness; emphasizes interdisciplinary assessment, care planning, and coordination; emphasizes goal-setting discussions with advanced care planning and points to necessity of effective communication with patient and family in order to have serious illness discussions, which can be documented and help establish patient’s goals and preferences as disease progresses

Best system of care: focuses on use of hospice

Specialist-level palliative care: in US, can be institution or community based; most US hospitals have palliative care consultation services; nursing home palliative care consultation services uncommon but slowly emerging; community-based palliative care takes place in patient’s home, uncommon because of current financing of health care system; community-based palliative care implemented through health care system (ie, hospice) prevalent

Hospice: commonly misunderstood health care system in US; used commonly by those dying of advanced illness as well as their families; best understood as government-supported health care system created >35 years ago to provide specialist palliative care in home for those with advanced illness; in US, hospice should be viewed as entitlement program like Social Security, which must be elected by eligible patients and can be revoked at any time; in 1980s, hospice created by government as country’s first managed care insurance benefit; by regulation, most patients under hospice care have to be at home; in addition to hospice being home care program, entitlement program, and managed care insurance benefit, it may be construed as philosophy of care that focuses on best type of care provided for imminently dying patients; view that hospice represents philosophy of “good death” appears in literature; (lecturer’s bias not to designate hospice as philosophy but rather as benefit providing suite of services;) patients and families need help, particularly with patients with advanced disease living at home, and hospice can provide no-cost benefit that offers care and services to address unmet needs; if easier for them to accept this care by not discussing the fact that hospice philosophy of care that addresses potential for good death, one should respect that

Services: case management by interdisciplinary team, including physician, nurse, social worker, and chaplain, at minimum; patient and family must have access to volunteers and home health aid hours; must have access to other services (eg, speech and swallow therapy, physical and occupational therapy, and wound care); all tests and treatments, drugs, durable medical equipment, and supplies must be provided at no cost if related to terminal diagnosis; if patient has acute need and requires skilled support, hospice agency must provide access to inpatient bed; patient who develops acute needs that require higher level of support must be provided access to period of continuous home care; if family needs respite because of caregiving responsibilities, hospice agency must provide access to inpatient stay for ≤5 days for patient; after patient dies, hospice required to provide bereavement services for 13 mos; no time limit for hospice as long as patient remains eligible (documented every 2 to 3 mos through recertification by hospice physician); patient can revoke benefit at any time and return to prior system of care; prior system of care remains in effect for all medical problems unrelated to terminal illness; challenge in caring for patients receiving hospice services, distinguishing between problems related or unrelated to terminal illness because former problems, but not latter problems, must be case managed by hospice agency; services provided without deductible, no requirement for copay, and no requirement for coinsurance; any payer system for cost of services unrelated to terminal illness allowed

Patients served: >4000 hospice agencies certified by government (serving >1.7 million patients, ~50% of those people aged >65 yrs die each year); hospice agencies range from small volunteer organizations to national corporate chains; most agencies for-profit organizations and offer differences in care from typical not-for-profit company; length of care provided by hospice very short; median period of care <25 days because of late referral; this suite of services only accessed for period of just ≥ 3 wks by 50% of patients; hospices vary in competencies required of staff, and variation in services; proportion of hospices do not have capability of providing continuous home care (but actually regulatory requirement); many hospices provide very little in way of bereavement services; patients who live in area with multiple hospice agencies should determine which agencies require education and competency testing of staff, have access to all elements of hospice benefit (eg, continuous care and bereavement support), provide education for their partners, and provide high level of services

Access to hospice: oncologists have obligation to try to improve access to hospice, given potential ability to address needs of patients and families living through advanced illness; to improve access, physicians need clarity about key features; comanagement — oncologist does not hand patient off to hospice agency for ongoing management with no further involvement unless patient or attending oncologist wishes; oncologist can choose to be attending of record or can remain consulting physician; nurse practitioners or physician assistants can choose to be attending of record; oncologist seeing patient for treatment of disease can accompany that patient and can potentially be central factor for both patient and family as they live through dying process; reimbursement — every clinician encounter with patient enrolled in hospice agency reimbursable, and physicians can be reimbursed for every encounter if billed appropriately; if physician attending of record, continue to bill government through part B Medicare; if physician consultant, must bill hospice agency; common misconception that physician care of patients enrolled in hospice pro bono; hospice agencies receive per diem payment from government based on level of care (4 levels) patient receiving; hospice agencies must provide all care stipulated by regulation for that single per diem payment; important for hospice agency to truly case manage patients– to be aware of what treatments patient receives, and what oncologist or other clinicians recommend so hospice agency can coordinate care and restrain costs in way that allows them to remain in business, receiving per diem payments for all care under the hospice benefit; palliative care saves payers and hospice saves Medicare money, depending on hospice length of stay

Eligibility review: understand who may be eligible for hospice benefit, how to develop process by which eligible patients have discussion about hospice, and how to do referral; according to government regulation, eligibility for hospice has only 2 criteria — 1. two licensed physicians (1 employed by hospice agency) must certify that patient’s life expectancy ≤6 months if disease runs its expected course; fundamentally clinical judgment; if physician views patient’s primary illness and comorbidities as together producing situation in which prognosis likely to be ≤6 months if disease runs its expected course, patient eligible; o 2. patient or surrogate must elect benefit; no requirement that patients give up anything when they enroll in hospice; hospice agencies will define what patients they can and cannot take as result of need to provide case management and incur care costs; hospice agencies typically unable to accommodate patients receiving infusional chemotherapy because costs and complexity too great; every hospice agency will determine for itself what it can and cannot cover based on risk pool, size of agency, mix between patients who have complex needs and those who do not, and skill set of their clinicians

Improving access to hospice: 2-question protocol — 1. is patient medically eligible for hospice? 2. is patient appropriate for hospice, given planned treatments and known patient and family preferences?; medical eligibility based on total picture; consider using “surprise question” to develop understanding of prognosis; surprise question asks clinician if they would be surprised if patient were to die of this illness in next 6 mos to 1 yr; if no, patient may be eligible for hospice; if yes, high probability patient not eligible

In 2-question protocol, first question (is patient medically eligible for hospice?) nay be informed by asking yourself or having staff trigger you or other clinicians involved with case to answer surprise question; second question (is patient appropriate for hospice given planned treatments and patient and family preferences?) answered by having understanding of types of treatments that will be accepted by hospice, may require prior knowledge or prior work with individual hospice, and some idea about whether patient or family may be open to hospice referral; do not make broad assumptions about expectations regarding patient’s or family’s views

Prognosis related to medical eligibility: most clinicians recognize that performance status scales predictive of prognosis; ECOG scale, Karnofsky performance status scale, and palliative performance status scale work equally well; for ECOG, score of 3 to 4 typically associated with prognosis of mos, suggesting patient may be hospice eligible; studies suggest core group of symptoms that may be considered particularly important in determining prognosis, including presence of dyspnea, cognitive impairment, and group of gastrointestinal symptoms (eg, dysphagia, anorexia, weight loss, dry mouth); if those broad areas of symptoms and signs involved, patients have shorter life expectancy; tools have been developed to improve prognostication; palliative prognostic score, so-called PAP, uses Karnofsky performance status, anorexia, dyspnea, 2 tests available on complete blood count (white blood cell count and lymphocyte percentage), and clinical prediction of survival; score validated and not generally used in clinical practice, but gives sense that, in addition to performance status, other elements (eg, biomedical factors, symptoms) important in prognostication

Active dying: actively dying patient must be recognized as transitioning to this phase; then symptoms and signs need to be addressed; important elements related to communication, appropriate goal setting, and support of family should be activated

Signs that suggest patient transitioning to active dying: typically, declining response to voice and contact; changes in muscle activity, urinary function, breathing, skin color, and vital signs; most clinicians gain experience with recognizing these changes and can communicate shortness of time to family; requires careful assessment and management; must be addressed with cultural sensitivity

Management: management of more challenging elements may require working knowledge of clinical bioethics, and may be necessary to make referrals and bring in resources that can help patient and family, particularly if home death planned; for oncologist, first step often to reassess decision making if change has occurred in patient’s decision or capacity, or if change in identified decision maker; patients transitioning to period of active dying often noncommunicative; at this point, advanced directives become critically important; hopefully, these advance directives have been kept updated and consistent with patient’s and family’s values and preferences; may be important to reassess goals of care — deprescribing common and often done by hospice physician upon enrollment in hospice program; if patient no longer benefiting from drug or if potential for harm exceeding benefit, drug should be stopped; also important to consider that other therapies, including some that may be labeled life sustaining, now have burdens greater than benefits and may be withdrawn; withdrawal of life-sustaining therapy on grounds of individual preferences or futility more challenging problem that often involves discussion with family, clear understanding of patient’s prior expressed wishes, and may involve interactions with ethics consultation service; assessing place of death — home death may be offered to patient and family if hospice in place, and it may be important to have conversation with patient or surrogate decision maker

Common conditions at end of life that may be addressed from medical perspective: agitated delirium; preterminal delirium common; delirious patients expected to die imminently have set of goals that typically do not include reversal of factors driving delirium, but rather aggressive treatment of symptoms of delirium to reduce distress; patients may have pain, anxiety, breathlessness; unconscious patients may have noisy respirations (“death rattle”), which can be distressing to families; may have need for mouth care or management of wounds and ulcers that need to be performed until patient dies; key treatment issue with imminent death, provide care that reduces suffering; routine interventions may not accomplish this goal

Palliative sedation: medical treatment by which patient believed to be near end of life given drug with goal of producing sedation sufficient to relieve suffering; widely accepted when physical symptoms refractory to conventional therapy near end of life; based on ethical practices predicated on constructs of proportionality and principle of double effect; more controversial when sources of suffering existential or spiritual; in most cases, palliative sedation performed because of agitated delirium that fails to respond to medical intervention; under these circumstances, can be highly effective in reducing patient’s suffering and allowing patient to have safe and dignified end-of-life experience, and families to experience patient’s death with minimum of their own suffering

Readings

Ferrell BR et al: Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2017;35(1):96-112; Garetto F et al: Palliative sedation for the terminally ill patient. CNS Drugs. 2018;32(10):951-61; Hui D et al: Prognostication in advanced cancer: update and directions for future research. Support Care Cancer. 2019;27(6):1973-84; Schlick CJR, Bentrem DJ: Timing of palliative care: when to call for a palliative care consult. J Surg Oncol. 2019;120(1):30-4.

Disclosures

For this activity, the following has been disclosed: Dr. Portenoy has received research/grant support from Tabula Rasa Healthcare. The planning committee reported nothing to disclose.

Acknowledgements

CME/CE INFO

Accreditation:

The Audio- Digest Foundation is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The Audio- Digest Foundation designates this enduring material for a maximum of 0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Audio Digest Foundation is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's (ANCC's) Commission on Accreditation. Audio Digest Foundation designates this activity for 0 CE contact hours.

Lecture ID:

ONBR200139

Expiration:

This CME course qualifies for AMA PRA Category 1 Credits™ for 3 years from the date of publication.

Instructions:

To earn CME/CE credit for this course, you must complete all the following components in the order recommended: (1) Review introductory course content, including Educational Objectives and Faculty/Planner Disclosures; (2) Listen to the audio program and review accompanying learning materials; (3) Complete posttest (only after completing Step 2) and earn a passing score of at least 80%. Taking the course Pretest and completing the Evaluation Survey are strongly recommended (but not mandatory) components of completing this CME/CE course.

Estimated time to complete this CME/CE course:

Approximately 2x the length of the recorded lecture to account for time spent studying accompanying learning materials and completing tests.