End-of-life care

Overview

Introduction

Palliative care is specialized medical care for people living with serious illness that focuses on achieving the best quality of life for both the patient and their family or caregivers.[1] [2] Palliative care provides patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. Palliative care uses an interdisciplinary approach; the interdisciplinary team consists of doctors, nurses, and other specialists to provide support as needed. Palliative care is appropriate at any age and at any stage in a serious illness, and can be given alongside disease-directed or curative-based treatment.

Hospice is a philosophy and delivery system of care that focuses on the palliative care needs of patients and their families or caregivers, to relieve suffering and promote comfort during the last months of life when curative-based therapy is no longer desired, no longer an option, or no longer helping the patient to feel better and/or live longer.

Palliative care principles and basic skill sets should be integrated into the daily clinical practice of patient care, regardless of the underlying illness or stage of disease. Hospice care should be considered for patients facing serious illness with anticipated life expectancy of 6 months or less.

Outpatient palliative care services

Palliative care addresses the physical, psychological, social, and spiritual issues of a patient's disease process. The Centers for Medicare and Medicaid define palliative care as patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering; throughout the continuum of illness, palliative care involves addressing physical, intellectual, emotional, social, and spiritual needs, and aims to facilitate patient autonomy, access to information, and choice.[3] The team elicits the patient's value-based goals of care and focuses on improving the quality of life and promoting comfort by therapies that are in line with the patient's goals. This may involve managing pain and non-pain symptoms, enhancing communication and education, assisting with difficult decision making and treatment choices, advance-care planning, disposition planning, providing emotional and spiritual support, and providing grief and bereavement services. These services are usually provided as a complement to disease-directed therapies. Outpatient palliative care has been shown to improve quality of life, improve symptom control, decrease emergency department visits and hospital admissions, improve survival, and lower medical costs.[4]

Services provided

There is great variability in community palliative care services. Home visits may be provided by an advanced practice provider and social worker about every other week. Any recommendations for management are then communicated to a patient's primary-treating physician. Treatment and personal-care services are normally not provided.
Outpatient palliative care clinics are increasing in availability and help to bridge the gap between inpatient and home palliative care services.

Hospice-care services

Hospice care falls under the larger umbrella of palliative care. Hospice is a philosophy of care that focuses on the described palliative care needs of the patient and their family or caregivers, to relieve suffering and promote comfort during the end-of-life transition when curative-based therapy is no longer the focus. The Centers for Medicare and Medicaid define hospice care as a comprehensive set of services identified and coordinated by an interdisciplinary group to provide for the physical, psychosocial, spiritual, and emotional needs of a terminally ill patient and/or family members, as delineated in a specific patient plan of care.[3] Addressing a patient's psychosocial and spiritual transition from curative-based to palliative therapies and goals is part of the hospice process. This is accomplished through an interdisciplinary team approach, which may include physicians, nurses, nursing aides, social workers, case managers, chaplains, dietitians, pharmacists, therapists, and trained volunteers.[5] To be eligible for hospice care, a patient must be willing to relinquish Medicare-reimbursed services for therapies focused on cure or life prolongation and must be certified by the attending physician and the hospice physician as having a terminal illness with a life expectancy of up to 6 months, should the illness run its normal course.[5] Patients may continue to receive hospice care past 6 months if the physician attests that the patient's prognosis remains 6 months or less.[6] Patients may opt to relinquish hospice services at any time.

Services provided

In contrast to outpatient home palliative care services, hospice services provide comprehensive patient care. Coverage from the Hospice Medicare Benefit includes interdisciplinary team services, such as physician oversight and nursing services. Many hospices provide up to 1 to 4 hours per day of nursing/certified nursing-assistant care at home up to 5 days a week, depending on an individual patient's needs.[5] Home-care coverage is not 24 hours a day. However, the Medicare Hospice Benefit includes a continuous-care option that is available during periods of acute symptom crisis to help keep the patient at home.
Patients are recommended and/or required to have a care provider for home hospice, usually provided by family and/or friends. Durable medical equipment is covered, along with medications related to the hospice diagnosis for pain and symptom control. Inpatient hospice services may be offered during times of crisis for acute symptom management under the status of "general inpatient". Twenty-four-hour-per-day personal care and interdisciplinary services, in addition to facility room and board, are covered for patients with a status of "general inpatient" for acute symptom control. Room and board are not covered for routine residential care (i.e., nursing homes) under Medicare.

Need for palliative care

The 2017 estimated life expectancy at birth in the US is 78.6 years: 76.1 years for males, and 81.1 years for females.[7] Advancements in public health and technology have modified the leading causes of death to be the end result of chronic illnesses. In 2017, the leading causes of death in the US were heart disease, cancer, unintentional injuries, and chronic lower respiratory diseases.[7] Globally, the leading causes of death in 2015 were heart disease, stroke, lower respiratory tract infections, and chronic obstructive pulmonary disease.[8]

The older population is growing at a rate faster than that of the world's total population.[9] The percentage of older people is projected to more than double globally in the next half century. One in every 5 Americans will be older than the age of 65 by the year 2030.[10] The aging population poses unique socioeconomic consequences worldwide. A new challenge, as outlined by the United Nations, will be "to ensure that persons everywhere are able to age with security and dignity and to continue to participate in their societies as citizens with full rights".[11] The healthcare-delivery system is changing to be responsive to the needs of people with serious illnesses and end-of-life issues. Palliative care will have a key role during this transition.

Many gaps exist in end-of-life care. In a multicenter landmark study, only 47% of physicians knew when their patients desired do-not-attempt-resuscitation (DNAR) status, with only 51% of these patients having a written DNAR order.[12] Despite >50% of patients dying in the hospital, 49% to 100% of patients and 63% of caregivers state that home is the preferred place of death.[12] [13] In addition, symptom control is not optimal, with surrogates reporting 50% of their loved ones having moderate to severe pain >50% of the time during the last 3 days of life.[12] Families of patients who have died have rated the quality of end-of-life care to be lower in 2011-2013 relative to 2000.[14] Routine palliative care-led support and information team meetings in the ICU setting may not be helpful regarding symptoms of depression and anxiety in families of patients with chronic critical illness.[15]

The 2014 Institute of Medicine report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, calls for major reform in the US health system to ensure high-quality, affordable, and sustainable end-of-life care for Americans.[16] The consensus report emphasizes quality end-of-life care that is consistent with patients' values, goals, and preferences as a national priority. The report offers recommendations for improving end-of-life care in five areas:

Delivery of person-centered, family-oriented end-of-life care
Clinician-patient communication and advance care planning
Professional education and development
Policies and payment systems to support high-quality end-of-life care
Public education and engagement.

Palliative care has been shown to improve patient outcomes and provide lower cost of care and intensive care utilization.[17] [18] [19] [20] [21] [22] [23] [24] [25] Avoidance of intensive care admission is also pertinent if in-keeping with the goals of the patient and their family.[26] [27] [28] There is also emerging evidence for the role of palliative care for surgical patients.[29] Outpatient palliative care services provided to patients with advanced cancer receiving standard care improved quality of life and mood compared with patients receiving only standard care, with no differences in survival.[30] Home palliative care services decrease symptom burden and increase the chance of dying at home for patients with cancer.[31] [32] [33] In addition, patients with newly diagnosed metastatic non-small cell lung cancer who received palliative care in addition to standard care had better quality of life and mood, and longer survival, than patients receiving only standard care.[34] Initiating palliative care earlier on in cancer care has also been shown to improve survival.[35] [36] The American Society of Clinical Oncology advocates integrating palliative care principles into the care of patients with advanced cancer, and incorporating quality palliative care into oncology training and certification.[37] [38]

In September 2011, the Joint Commission on Accreditation of Health Care Organizations launched the Advanced Certification Program for Palliative Care, recognizing hospital inpatient programs that demonstrate exceptional patient- and family-centered care and optimize quality of life for patients with serious illness. In July 2016, the Joint Commission released the Community-Based Palliative Care Certification option for accredited home care organizations.[39] The standards for palliative care certification are built on the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care and the National Quality Forum's National Framework and Preferred Practices for Palliative and Hospice Care Quality.[40]

Role of prognostication

Physicians are not accurate in prognostication of patients' risk of death. Survival predictions of terminally ill patients at time of hospice referral were only 20% accurate (within 33% of actual survival).[41] Not only were physicians overoptimistic, but they also overestimated survival by a factor of 5.3. Factors that decreased prognostic accuracy were less-experienced physicians and longer duration of doctor-patient relationship. Overoptimistic prognostication makes planning for the future more difficult and may lead to late hospice referrals. Terminally ill cancer patients are more likely to request life-extending therapies over comfort measures if they hold overoptimistic survival prospects.[42] [43] The Institute for Clinical Systems Improvement supports healthcare providers asking the question "Would you be surprised if your patient died within the next 2 years?" to assist in identifying the population who would benefit from palliative care.[44] In the cancer population, some studies have shown that asking "Would I be surprised if this patient died in the next year?" identifies patients who are at greatly increased risk of 1-year mortality; however, one systematic review found that the surprise question was a poor to modest predictive tool for death.[45] [46] [47]

Prognosis is often communicated by providing a time range that encompasses average life expectancy (i.e., hours-days, days-weeks, weeks-months, months-years, years, decades).[48] The patient and family should be cautioned that these are rough estimates, that physicians are usually inaccurate in their estimates, and that the estimate may change over time depending on the patient's disease course and events.

Prognostication indices

Numerous prognostic indices have been developed over recent decades that can be used to guide clinical practice and medical decision making. Prognostication tools improve physicians' clinical-prognostic estimate.[49] These include:
- Palliative Performance Scale (PPS): initial PPS score on admission to a hospice palliative care unit predicts survival, including for patients admitted to the hospital with palliative care consults.[50] [51] PPS is significantly associated with hazard of death in ambulatory cancer patients.[52]
- Palliative Prognostic Score (PaP): PaP scores of patients admitted to the hospital with palliative care consults predict survival, including for patients admitted to the hospital with exclusively noncancer diagnoses seen by a palliative care service.[53] [54]
- Functional Measures as Predictors of Mortality: 3 functional measures (impairment in instrumental activities of daily living, Mini-Mental State Examination score of <20, and shortened Geriatric Depression Scale score of 7 or higher) predict short- and long-term mortality in older patients admitted to the hospital.[55]
- CARING criteria: 5 prognostic indicators (cancer as the primary diagnosis, 2 or more admissions to the hospital in the past year for a chronic illness, residence in a nursing facility, ICU admission with multi-organ failure, 2 or more noncancer hospice guidelines) identified on hospital admission predict risk of death in 1 year.[56] [57]
- Prognostigram: patient-specific prognostic tool for adult cancer patients that generates patient-unique survival curves.[58] Washington University in St Louis: Prognostigram
- ePrognosis: online repository of published geriatric prognostic indices where clinicians can access evidence-based information on patient prognosis.ePrognosis: estimating prognosis for elders

Citations

Key Articles

National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: adult cancer pain [internet publication].[Full Text]
National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: palliative care [internet publication].[Full Text]
Sanders JJ, Temin S, Ghoshal A, et al. Palliative care for patients with cancer: ASCO guideline update. J Clin Oncol. 2024 Jul 1;42(19):2336-57.[Abstract][Full Text]
Andersen BL, Lacchetti C, Ashing K, et al. Management of anxiety and depression in adult survivors of cancer: ASCO guideline update. J Clin Oncol. 2023 Jun 20;41(18):3426-53.[Abstract][Full Text]

Other Online Resources

Washington University in St Louis: Prognostigram
ePrognosis: estimating prognosis for elders
Palliative care Outcome Scale (POS)
Alberta Health Services: Edmonton Symptom Assessment System Revised
Stanford Letter Project
The Conversation Project
PREPARE
My Gift of Grace card game
Go Wish card game
American Academy of Hospice and Palliative Medicine
National Consensus Project for Quality Palliative Care

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