• The World Health Organization (WHO) defines palliative care as: “An approach that improves the quality of life (QOL) of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual” [2].

• The Centers for Medicare and Medicaid Services (CMS) have endorsed the following definition: “Palliative care means patient and family-centered care that optimizes QOL by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice” [3].

• The Center to Advance Palliative Care defines palliative care as: “Specialized medical care for people with serious illnesses … focused on providing patients with relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis. The goal is to improve QOL for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment” [4].

• The American Society for Radiation Oncology (ASTRO) has established three palliative guidelines [5]:

 Palliative radiotherapy for bone metastases (2011).

 Palliative thoracic radiotherapy in lung cancer (2011).

 Radiotherapeutic and surgical management for newly diagnosed brain metastasis (2012).

• In 2012, the American Society of Clinical Oncology (ASCO), published a provisional clinical opinion (PCO) based on seven published randomized controlled trials (RCTs) that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden [6].

• The National Consensus Project for Quality Palliative Care published the third edition of their guidelines in 2013. These guidelines “promote quality palliative care, foster consistent and high standards in palliative care, and encourage continuity of care across settings.” There are eight domains of care: 1: Structure and Processes of Care; 2: Physical Aspects of Care; 3: Psychological and Psychiatric Aspects; 4: Social Aspects of Care; 5: Spiritual, Religious, and Existential Aspects of Care; 6: Cultural Aspects of Care; 7: Care of the Patient at the End of Life (EOL); and 8: Ethical and Legal [7].

• Symptom management.

• Establishing goals of care that are in keeping with the patient’s values and preferences

 Code status.

 Advance directives.

• Consistent and sustained communication between the patient and all those involved in his or her care.

• Psychosocial, spiritual, and practical support both to patients and their family caregivers.

• Coordination across sites of care.

• Physicians.

• NPs/PAs.

• Registered nurses.

• Social workers.

• Spiritual Counselor.

• Pharmacists.

• Hospital

 Consultative service.

 Inpatient palliative care units.

 Comanagement models.

• Ambulatory setting.

• Nursing home.

• Home.

• Hospice.

• Key barriers to palliative care integration across three WHO domains:

 Education domain: Lack of adequate education/training and perception of palliative care as end-of-life care.

 Implementation domain: Inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings.

 Policy domain: Fragmented health care system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers [8].

• A metaanalysis of 19 studies concluded that palliative care and hospice teams improved patients’ pain and other symptoms [9].

• In a landmark study, patients with newly diagnosed metastatic nonsmall cell lung cancer who were randomly assigned to early palliative care integrated with standard oncologic care had a better QOL, less depressive symptoms, and longer median survival than did those who were assigned to oncologic care alone [10].

 The ambulatory palliative care assessment in this trial focused on symptom management, patient, and family coping, and illness understanding and education [11].

 In a later analysis, patients receiving early palliative care received the same number of chemotherapy regimens as did those in the control group but they were less likely to have chemotherapy continued close to death and more likely to enroll in hospice for a longer duration [12].

• The ENABLE II trial demonstrated higher scores for QOL and mood in patients with any life-limiting cancer (prognosis of approximately 1 year) who received psychoeducational palliative intervention in addition to standard care [13].

• The ENABLE III trial randomly assigned patients with advanced cancer to receive an in-person palliative care consult, structured palliative care telehealth nurse coaching sessions (once per week for six sessions), and monthly follow-up either early after enrollment or 3 months later.

 Outcomes were QOL, symptom impact, mood, 1-year survival, and resource use (hospital/intensive care unit days, emergency room visits, chemotherapy in last 14 days, and death location).

 Early-entry participants’ patient-reported outcomes and resource use were not statistically different; however, their survival 1-year after enrollment was improved compared with those who began 3 months later [14].

• A randomized trial demonstrated that comprehensive outpatient palliative care in patients who continue to pursue disease modifying treatment, compared to usual care, improves symptom management, and patient satisfaction [15,16].

• Many clinicians fear that conversations about EOL issues with have a negative impact on patient’s QOL, however, this has not panned out it the literature. Failure to have these conversations has documented adverse effects [17–21]:

 Care inconsistent with values and goals.

 Inferior QOL.

 Prolonged death and increased suffering.

 Inferior bereavement outcomes.

 Increased costs without benefits.

• Palliative care with a strong emphasis on quality communication is a high-value intervention and results in [10,11,13,22–25]:

 Better QOL.

 Reduction in the use of aggressive care.

 Lower cost.

 25% increase in survival [10].

1. Eligibility for Medicare part A, which is the benefit that covers hospice in addition to other care services (i.e., inpatient hospitalization, skilled nursing facility care, nursing home care, and home health services).

2. Medicare-approved hospice.

3. A statement signed by the patient indicating that they are choosing hospice care instead of regular Medicare. Of note, Medicare regulations allow for regular Medicare reimbursement for incidental medical expenses that are unrelated to the terminal illness (e.g., acute myocardial infarction in a patient with advanced cancer).

4. Certification by both the patient’s personal physician and the hospice medical director that the patient has a terminal illness and is likely to have less than 6 months to live if the disease follows its usual course. In addition, the patient’s treatment goals should emphasize alleviating symptoms of illness and focusing on comfort and QOL rather than cure of the underlying disease.

• Skilled nursing care.

• Symptom management.

• Psychosocial and spiritual care.

• Short-term inpatient care for difficult to control symptoms.

• Short-term respite is available for 5 days for every 30 days when caregivers are overwhelmed at home.

• Provides medications related to terminal condition, medical supplies and equipment.

• Bereavement care to surviving family and caregivers.

• The patient’s personal physician (typically the primary care physician or medical oncologist).

• Hospice physician (or medical director).

• NPs/PAs.

• Registered nurses.

• Home health aides.

• Social workers.

• Clergy or other counselors.

• Trained volunteers.

• Speech, physical, and occupational therapists, if needed.

• Home

 The majority of people receiving hospice get their care at home in a private residence. However, hospice care can also take place in residential facilities, assisted living, or nursing homes. A main caregiver is identified as the individual responsible for around-the-clock supervision of the patient. This person is with the patient most of the time and is trained to provide much of the hands-on care.

• Nursing home

 Many nursing homes and other long-term care facilities have small hospice units. Some have staff trained to care for hospice patients while others contract with outside hospice agencies to provide care. This can be a good option for patients who want hospice care but do not have primary caregivers to take care of them at home.

• Residential hospice

 Many communities have free-standing, independently owned hospices that feature inpatient care buildings as well as home care hospice services. A free-standing hospice can benefit patients who do not have a caregiver at home or those that do not want to die in their residence which comes up frequently with parents with young children.

• Inpatient setting

 Hospitals may have a dedicated hospice program and/or a special hospice unit that they staff. Others consult outside hospice teams that visit patients, provide recommendations, patient support, and staff education/support.

 To find a hospice in your area:

 http://www.nhpco.org/find-hospice

 http://www.hospicedirectory.org/

 http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/hospicecare/hospice-care-how-to-find

• Medical condition stabilizes (79%).

• Patient or family decision (12%).

• Decision is made to pursue more aggressive therapy (7%).

• The first national survey of the enrollment policies of 591 hospices showed [26]:

 78% of hospice programs reported having at least one policy that could restrict access.

 61% of hospices won’t accept a patient on chemotherapy.

 55% of hospices won’t accept someone relying on parenteral nutrition.

 40% of hospices won’t accept patients requiring transfusions.

 30% of hospices won’t accept a patient who needs radiation therapy.

 32% of hospices won’t accept a patient with an intrathecal catheter.

 30% of hospices require a caregiver at home.

 12% of hospices won’t accept patients with tube feedings.

 Only 30% of hospices offer some form of open access enrollment. This is possible for patients who are not yet eligible for hospice under the MHB. These patients have the traditional hospice services while simultaneously retaining access to medical treatments such as palliative chemotherapy, radiation, and transfusions.

• Smaller hospices (average daily census of 60), for-profit hospices, and hospices in certain regions of the country consistently reported more limited enrollment policies.

• Larger hospices (average daily census of 200) were more likely to have no restrictive enrollment policies or open access enrollment [26].

• The average hospice stay is 2 weeks with average daily Medicare reimbursement rate of $150 per day.

 The highest costs to the hospice are around admission (equipment, staff visits, medications, durable medical equipment) and death (staff visits, medications, etc.).

 Per Meyers et al. [29]:

– For 6 month hospice stay the hospice would be reimbursed $27,000.

– For a 2 week hospice stay the amount decreases to $2100.

– Palliative radiation costs can be as much as $10,000 and out of reach for many small hospices across the country.

 Hospice and palliative radiation are not mutually exclusive; if an individual hospice organization is able to absorb the cost of radiation it would be an available treatment option.

• A secondary Analysis of The National Hospice Study revealed an improved quality of death in patients receiving hospice care [30].

• In a mortality follow-back survey, family members of patients who died in hospice were significantly more satisfied with the care than those of patients who died while receiving care in hospitals, nursing homes, or home health agencies [31].

• Family survivors are less likely to experience posttraumatic stress disorder and prolonged grief disorder after hospice care as compared to those whose loved ones died in a hospital or intensive care unit [32].

• Increasing evidence also suggests that hospice is associated with decreased direct (billed services) costs in the home setting, particularly for patients with cancer [33,34]. In contrast, data on the consequences of increased access to, and length of stay in, hospice among nursing home residents suggest that despite reduced hospital utilization, total Medicare spending is actually higher for hospice beneficiaries in nursing homes, by an average of around $6000 per person [35].

• Finally, the available data suggest that 80% of Americans prefer to die at home but that only approximately 25% do [36]. However, among the patients who die with hospice involved in their care, 75% die at home.

 https://library.tmc.edu/website/end-of-lifepalliative-education-resource-center-eperc/

 http://www.nhpco.org/about/hospice-care

 http://www.nhpco.org/resources

 http://www.helpguide.org/articles/caregiving/hospice-and-palliative-care.htm

 http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/hospice-fact-sheet

 http://hospicefoundation.org/End-of-Life-Support-and-Resources/Grief-Support.aspx

 http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx

• Planning for the EOL often occurs late or not at all. Several studies have shown that patients with serious medical illnesses do not discuss EOL preferences, or that the first discussions occur in the last days to months of life [17–19].

• For patients with advanced cancer [20]:

 The first EOL discussion occurred median 33 days prior to death.

 55% of initial EOL discussions occurred in the hospital.

 Only 25% of these discussions were conducted by the patient’s oncologist.

 Misconceptions held by health care providers that were disproved:

– It will make people depressed—Incorrect.

– It will take away hope—Incorrect.

– Involvement of Hospice or Palliative care will Reduce Survival—Incorrect.

– We do not really know a patient’s prognosis—True, but with qualifications.

– Talking about prognosis is not culturally appropriate—Incorrect.

– We do not like to have these discussions, and they are hard on us—True.

• A systematic review of the impact of ADs was performed in 2014 [49]. The results were notable for:

 Decreased rate of hospitalization and the chances of dying in the hospital in two out of five studies.

 Decreased use of life-sustaining treatment in 10 out of 22 studies.

 Increased use of hospice or palliative care in five out of seven studies.

• Earlier conversations addressing EOL discussions about patients goals and priorities and coordinated ACP [17,37,50]:

 Improves EOL care and enhances goal-concordant care.

 Reduces the incidence of anxiety, depression, and posttraumatic stress in surviving relatives thus improves bereavement outcomes.

 Reduces burden of decision-making for families.

 Improves patient and family satisfaction with hospital care.

 Are associated with less aggressive medical care near death, fewer hospitalizations, and earlier hospice referrals.

• Durable Power of Attorney for Health Care—A Durable Power of Attorney for Health Care (DPAHC, Health Care Proxy (HCP), or Health care Power of Attorney) is a signed legal document authorizing another person to make medical decisions on the patient’s behalf in the event the patient loses decisional capacity [51].

• Living Will—The Living Will (LW) is a document detailing a person’s preferences regarding their medical care in circumstances in which they are no longer able to express informed consent. Typically addresses resuscitation and life support but may also include preferences regarding tube feedings, implantable defibrillators, dialysis, etc.

• Combined Directives—ACP documents are being developed that include components of the LW along with a values history and instructional directive, while also designating a surrogate decision-maker. One example is the “Five Wishes,” which combines the LW with the DPAHC [52].

• Physician Orders for Life-Sustaining Treatment (POLST)—The POLST paradigm is an approach to EOL planning emphasizing: (1) ACP conversations between patients, health care professionals, and loved ones; (2) shared decision-making between a patient and his/her health care professional about the care the patient would like to receive at the end of his/her life; and (3) ensuring patient wishes are honored. As a result of these conversations, patient wishes may be documented in a POLST form, which translates the shared decisions into actionable medical orders. The POLST form assures patients that health care professionals will provide only the treatments that patients themselves wish to receive, and decreases the frequency of medical errors. It is meant to complement ADs, not replace them.

• State specific laws regarding LW’s; http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289

• http://www.polst.org/educational-resources/

• Table 2. Randomized Controlled Trials of Decision Tools for ACP in:

Austin C, Mohottige D, Sudore R, Smith A, Hanson L. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med 2015;175(7):1213–1221. DOI: 10.1001/jamainternmed.2015.1679 [53].

• Table 3. Randomized Controlled Trials of Decision Tools for Current Treatment:

Austin C, Mohottige D, Sudore R, Smith A, Hanson L. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med 2015;175(7):1213–1221. DOI: 10.1001/jamainternmed.2015.1679 [53].