END-OF-LIFE CARE

End-of-life care describes the support and medical care given during the time surrounding death. Older people often live with one or more chronic illnesses and may need care for days, weeks, and even months before death. The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes.

Physicians are obligated to comply with the refusal of life-sustaining treatment by a competent patient who has been adequately informed of the consequences of referral and has applied their own values in making a decision to refuse or who have prepared an advance directive or living will. Likewise, clinicians may refuse to provide care if:

• There is no medical rationale for the treatment
• The treatment has proven ineffective for the person
• Expectation of survival is low
• The person is unconscious and will likely die in a matter of hours or days even if treatment is given

Treatments that have been started can also be stopped. This is appropriate if the treatments are not beneficial or are not consistent with an individual’s wishes and priorities. Even if life-sustaining treatments have been refused or stopped, the individual can still receive medical care to treat symptoms such as pain or shortness of breath (Health in Aging Foundation, 2020; Olejarczyk & Young, 2020).

Preparing older adults and their families to plan and anticipate making decisions regarding end-of-life care and treatment is important, especially in the event that the older adult is not able to make decisions for themself. Older adults should plan and discuss their preferences with significant others, family, and healthcare providers to communicate their wishes through planning advance directives, a living will, and appointing a healthcare proxy (see also above under “Legal and Ethical Considerations”).

Palliative Care

Palliative care is an interprofessional team-based approach to patient care for the management of the discomfort, symptoms, and stress of serious illness and is appropriate for any person with a serious illness, regardless of the stage of the illness or how long the person is expected to live. Palliative care does not replace primary treatment but works together with the primary treatment being given.

The goals of palliative care are to:

• Provide relief from pain and other physical symptoms
• Maximize the quality of life
• Provide psychosocial and spiritual care
• Provide support to help family during the patient’s illness and in their subsequent bereavement

The ideal core palliative clinical team consists of:

• Physician(s)
• Nurses (inpatient and community care)
• Home health aides
• Social worker
• Physical therapist
• Occupational therapist
• Speech-language therapist
• Chaplain or pastoral care counselors
• Dietitians/nutritionists

Other professionals may include:

• Clinical psychologists
• Clinical pharmacists
• Massage therapists
• Music and/or art therapists
  (IAHPC, 2020)

Hospice Care

Hospice care begins after treatment is discontinued and is normally provided to patients with a life expectancy of six months or less. The goal of hospice care is to ensure that the remaining time the person has left is as comfortable and as meaningful as possible. Hospice provides expert medical care, pain management, and emotional and spiritual support tailored to the patient’s needs and wishes.

In 2018, 1.1 million Medicare beneficiaries died while enrolled in hospital care. Over 50% of the deaths occurred in the home and more than one third between nursing facilities, hospice in-patient facilities, and assisted-living facilities. The average spending per Medicare hospice patient was $12,200 (NHPCO, 2021).

Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Hospice services assist these family caregivers by making regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week.

The interdisciplinary hospice team usually consists of the patient’s personal physician, hospice physician or medical director, nurses, hospice aides, social workers, bereavement counselors, clergy or other spiritual counselors, trained volunteers, and speech, physical, and occupational therapists, if needed. The interdisciplinary team:

• Manages the patient’s pain and other symptoms
• Assists the patient and family members with the emotional, psychosocial, and spiritual aspects of dying
• Provides medications and medical equipment
• Instructs the family on how to care for the patient
• Provides grief support and counseling
• Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home or the caregiver needs respite time
• Delivers special services like speech, occupational, and physical therapy when needed
• Provides grief support and counseling to surviving family and friends

Bereavement services for the patient and significant others is an essential part of hospice care and is offered to families for at least one year, either through hospice or a referral to a community resource.

The U.S. hospice movement was founded by volunteers, and hospice is the only provider with Medicare Conditions of Participation requiring volunteers to provide at least 5% of total patient care hours. Hospice volunteers spend time with families offering direct support and provide clerical and other services that support patient care and clinical services (Center for Hospice Care, 2018; NHPCO, 2021).

HOSPICE AND VETERANS

Hospice is a benefit that the Veteran’s Administration offers to qualified veterans who are in the final phase of their lives, typically the last six months or less. This multidisciplinary team approach helps veterans live fully until they die. The VA also works very closely with community and home hospice agencies to provide care in the home.

The VA offers a self-assessment for caregivers that can be used in discussions with the Veteran’s social worker and care team about the home and community services and supports that will work best for both the caregiver and the Veteran. (See “Resources” at the end of this course.)

The National Hospice and Palliative Care Organization in collaboration with the Department of Veterans Affairs offers a program called We Honor Veterans that will benefit the vast majority of Veterans who are not enrolled in VA and may not be aware of end-of-life services and benefits available to them. We Honor Veterans collaborates with the VA to engage hospices in delivering quality end-of-life care for Vietnam-era and other combat veterans and those that have been impacted by trauma.

Men and women who have served in the military often carry experiences from their military service that present unique challenges at the end of life. We Honor Veterans is essential in helping hospices to:

• Education staff and communities about the end-of-life needs of veterans
• Coordinate care with VA and other healthcare organizations
• Provide veteran-to-veteran volunteer programs
• Connect veterans and their families with community resources
• Offer the services of staff and volunteers who are trained to meet the unique challenges faced by veterans and their families
  (WHV, 2020)