16.3 End of Life: Palliative Care and Hospice
Palliative Care and Hospice
Palliative care and hospice care are specialty care areas related to the care of patients and their families experiencing loss and the grieving process.
Palliative care is a broad philosophy of care defined by the World Health Organization as improving the quality of life of patients, as well as their family members, who are facing problems associated with life-threatening illness. It prevents and relieves suffering through early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial, or spiritual.[1] In the United States, palliative care is further described as, “Patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care occurs throughout the continuum of care and involves the interdisciplinary team collaboratively addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.”[2] Palliative care focuses on comfort and quality of life but also includes continuing curative treatment such as dialysis, chemotherapy, and surgery.
Hospice care is a type of palliative care that addresses care for patients who are terminally ill when a health care provider has determined they are expected to live 6 months or less. Like palliative care, hospice provides comprehensive comfort care and support for the family, but in hospice, curative treatments are stopped. It is based on the idea that dying is part of the normal life cycle and supports the patient and family through the dying and grief process. It also supports the surviving family members through the bereavement process. Hospice care does not hasten death but focuses on providing comfort while allowing a natural death. Symptoms control, including pain relief, and quality of life are of utmost importance.
Many patients decide to receive hospice care at home with the support of family, nurses, and hospice staff, but hospice services are also available across a variety of settings such as long-term care, assisted living facilities, hospitals, and prisons. In the United States, older adults enrolled in Medicare can choose to receive hospice care and stop receiving curative treatment. It is important to remember that stopping curative treatment does not mean discontinuing all medical treatment. For example, a patient with cancer who is no longer responding to chemotherapy can decide to enter hospice care and focus on comfort and quality of life. The chemotherapy treatment will stop, but other medical care, such as blood pressure medications or antibiotics to treat infection, will continue as long as they are helpful in promoting quality of life. Medicare will also pay for all related home durable medical equipment (such as a hospital bed and home oxygen therapy equipment) and all medications related to the terminal diagnosis (including pain medications).[3],[4] See Figure 16.3[5] for an image of a patient receiving hospice care.
Unfortunately, instead of viewing hospice as a care option to promote quality of life and reduce suffering, many patients and their families associate hospice care with “giving up,” or as a “death sentence,” and are resistant to this type of care. For this reason, many health care teams advocate the implementation of palliative care until patients and their family members are ready to discuss hospice care.
When a patient and their family members make the decision to implement home hospice, their desire is for the patient to comfortably spend their final days in their home environment. For many, this is a rich and loving way to spend the final days. Some families, however, may find that the 24-hour nature of care is exhausting and overwhelming. However, it can be very difficult to consider transferring the patient to a hospice inpatient unit at that time. Nurses can play a significant role in teaching families how to manage symptoms and get respite for themselves. If an inpatient setting is deemed best, it is often helpful to encourage patients and family members to tour alternative care agencies.
Comfort Care
Comfort care is a term commonly used in the acute care setting that is similar to palliative care and hospice. Comfort care occurs when the patient’s and medical team’s goals shift from curative intervention to symptom control, pain relief, and quality of life. However, there is no formal admission to hospice or palliative care that can impact insurance coverage. Rather than focusing on aggressive medical intervention, the focus changes to symptom control to provide the patient with the greatest degree of comfort possible as they approach their end of life. When comfort care is ordered by the provider, many interventions are eliminated to promote comfort, such as administering medications (with the exception of analgesics or antianxiety medications), vital signs monitoring, or performing blood draws or other invasive procedures.
Read more about the National Coalition for Hospice and Palliative Care’s Palliative Care Guidelines.
Ethical and Legal Considerations
End-of-life care often includes unique complexities for the patient, family, and nurse. There may be times when what the physician or nurse believes to be the best treatment conflicts with what the patient desires. There may also be challenges related to decision-making that cause disagreements within a family or cause conflict with the treatment plan. Additional challenging factors include availability of resources and insurance company policies and programs.
Despite these complexities, it is important for the nurse to honor and respect the wishes of the patient. Despite any conflicts in decision-making among health care providers, family members, and the patient, the nurse must always advocate for the patient’s wishes. Nurses should also be aware of the practice guidelines for ethical dilemmas stated in the American Nurses Association’s Standards of Professional Nursing Practice and Code of Ethics.[6],[7] These resources assist the nurse in implementing expected behaviors according to their professional role as a nurse.
If complex ethical dilemmas occur, many organizations have dedicated ethics committees that offer support, guidance, and resources for complex ethical decisions. These committees can serve as support systems, share resources, provide legal insight, and make recommendations for action. The nurse should feel supported in raising concerns within their health care organization if they believe an ethical dilemma is occurring.
Review ANA’s Code of Ethics.
DO-NOT-RESUSCITATE ORDERS AND ADVANCE DIRECTIVES
Additional legal considerations when providing care at the end of life are do-not-resuscitate orders (DNR) orders and advance directives. A do-not-resuscitate (DNR) order is a medical order that instructs health care professionals not to perform cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or their heart stops beating. The order is only written with the permission of the patient (or the patient’s health care power of attorney, if activated). Ideally, a DNR order is set up before a critical condition occurs. CPR is emergency treatment provided when a patient’s blood flow or breathing stops that may involve chest compressions and mouth-to-mouth breathing, electric shocks to stop lethal cardiac rhythms, breathing tubes to open the airway, or cardiac medications. The DNR order only refers to not performing CPR and is recorded in a patient’s medical record. It is crucial to understand that with a DNR order, clients are still entitled to medical treatment, such as antibiotics, IVs, and medications, and as such, treatment should be rendered when abnormalities are noted or anticipated. Wallet cards, bracelets, or other DNR documents are also available to have at home or in nonhospital settings. The decision to implement a DNR order is typically very difficult for a patient and their family members to make.[8] Many people have unrealistic ideas regarding the success rates of CPR and the quality of life a patient experiences after being revived, especially for patients with multiple chronic diseases or those receiving palliative care. For example, a recent study found the overall rate of survival leading to hospital discharge for someone who experiences cardiac arrest is about 10.6%.[9] Nurses can provide up-to-date patient education regarding CPR and its effectiveness based on the patient’s current condition and facilitate discussion about a DNR order.
Advance directives are legal documents that direct care when the patient can no longer speak for themselves and include a health care power of attorney, and a living will. The Health care power of attorney legally identifies a trusted individual to serve as a decision maker for health issues when the patient is no longer able to speak for themselves. It is the responsibility of this designated individual to carry out care actions in accordance with the patient’s wishes. A health care power of attorney can be a trusted family member, friend, or colleague who is of sound mind and is over the age of 18. They should be someone who the patient is comfortable expressing their wishes to and someone who will enact those desired wishes on the patient’s behalf.
The health care power of attorney should also have knowledge of the patient’s wishes outlined in their living will. A living will is a legal document that describes the patient’s wishes if they are no longer able to speak for themselves due to injury, illness, or a persistent vegetative state. The living will addresses issues like ventilator support, feeding tube placement, cardiopulmonary resuscitation, and intubation. It is a vital means of ensuring that the health care provider has a record of one’s wishes. However, the living will cannot feasibly cover every possible potential circumstance, so the health care power of attorney is vital when making decisions outside the scope of the living will document.
Read more about advance care planning at the National Institute on Aging.
Nurses must understand the health care practice legalities for the state in which they practice nursing. There can be practice issues in various states that raise additional ethical complexities for the practicing nurse. For example, Oregon, Washington, Vermont, and New Mexico all have laws that allow patients to participate in assisted dying practices involving assisted suicide or active euthanasia. In assisted suicide, the patient is provided the means to carry out suicide such as a lethal dose of medication. Active euthanasia involves someone other than the patient carrying out action to end a person’s life. Most nursing organizations prevent a nurse from participating in assisted dying practices. Nurses must be aware of the Nurse Practice Act in their state and the legalities and ethical challenges of nursing actions surrounding complex issues such as assisted suicide, active euthanasia, and abortion.
- World Health Organization. (2020). Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care ↵
- National Hospice and Palliative Care Organization. (2021). Explanation of palliative care. https://www.nhpco.org/palliative-care-overview/explanation-of-palliative-care ↵
- Lowey, S. E. (2015). Nursing care at the end of life. Open Library. https://ecampusontario.pressbooks.pub/nursingcare ↵
- Griffiths, H., & Keirns, N. (2015). Introduction to sociology 2E. OpenStax. https://openstax.org/books/introduction-sociology-2e/pages/1-introduction-to-sociology ↵
- “hospice-1761276_1280.jpg” by truthseeker08 is licensed under CC0 ↵
- American Nurses Association. (2015). Code of ethics for nurses with interpretive statements. American Nurses Association. https://www.nursingworld.org/practice-policy/nursing-excellence/ethics/code-of-ethics-for-nurses/coe-view-only ↵
- National Institute on Aging. (2021). What are palliative care and hospice care? U.S. Department of Health & Human Services. https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care ↵
- U.S. National Library of Medicine. (2024). Do-not-resuscitate order: Medlineplus medical encyclopedia. MedlinePlus. https://medlineplus.gov/ency/patientinstructions/000473.htm ↵
- Ouellette, L., Puro, A., Weatherhead, J., Shaheen, M., Chassee, T., Whalen, D., & Jones, J.. (2018). Public knowledge and perceptions about cardiopulmonary resuscitation (CPR): Results of a multicenter survey. American Journal of Emergency Medicine, 36(10), 1900-1901. https://doi: 10.1016/j.ajem.2018.01.103. ↵
Patient- and family-centered care that optimizes quality of life, anticipating, preventing, and treating suffering.
Patient- and family-centered care that begins after treatment of disease is stopped because the condition is not survivable. The focus is on symptom management and quality of life.
A term commonly used in the acute care setting to describe the shift in care that occurs when the patients and medical team’s goals shift from curative intervention to symptom control, pain relief, and quality of life. However, there is no formal admission to hospice or palliative care that can impact insurance coverage.
A medical order that instructs healthcare personnel not to perform CPR
Legal documents that direct care when the patient can no longer speak from themselves, including the living will and the health care power of attorney.
A legal document that identifies a trusted individual to serve as a decision maker for health issues when the patient is no longer able to speak for themselves.
A legal document that describes the patient’s wishes if they are no longer able to speak for themselves due to injury, illness, or a persistent vegetative state.
