Learning Objectives
By the end of this section, you will be able to:
- Describe the differences between hospice care and palliative care
- Identify the nurse’s role in hospice care
- Discuss the importance of communication during end-of-life care
- Analyze the impact and implications of medically assisted dying as an end-of-life care option
End-of-life care is designed to provide relief of symptoms for someone who has received a terminal or incurable diagnosis and has chosen not to receive treatment for the condition. It is not necessary to wait until hours, days, or even weeks prior to a person’s passing to implement this care. In fact, the sooner end-of-life care begins, the more opportunities there are to provide physical, spiritual, and emotional comfort for both the patient and their family—processes that may happen over many months.
End-of-Life Care
End-of-life care encompasses the time frame leading up to a person’s death. It is compassionate care designed to assist both the family and patient during this major season of life. Palliative care is introduced when a patient’s disease is no longer responding to treatment and focuses on the person’s physical comfort. In contrast, hospice care is utilized when a person is nearing the end of life (fewer than six months to live) and focuses not only on comfort care but also on the physical, psychological, emotional, and spiritual needs of both the patient and their family (American Psychological Association, 2024).
Hospice
Hospice care can be provided in the patient’s home, enabling the patient to die at home if they choose; however, some patients may prefer to seek hospice care in a hospital or specialized facility until the very end. Regardless of the setting, the goal of hospice is to provide comfort versus curative care. Hospice services are intended to bring comfort to the patient through physical, psychological, emotional, and spiritual care, as well as provide supportive services for the family during the dying and bereavement processes.
Hospice Team Members
Hospice care is provided by an interdisciplinary team, typically consisting of a provider, nurse, certified nursing assistant, social worker, and chaplain, who work together to provide a comprehensive plan of care (Table 32.3). Each team member holds a piece of the puzzle for the patient’s care plan; thus, it is vital that the team communicates frequently.
| Team Member | Role in Hospice Care |
|---|---|
| Primary Care Provider (PCP) Advanced Practice Registered Nurse (APRN) Nurse Practitioner (NP) Physician Assistant (PA) |
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| Nurse |
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| Certified Nursing Assistant (CNA) |
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| Social Worker (SW) |
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| Chaplain |
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Settings of Care
Hospice care is commonly provided in the patient’s home. However, hospice care can also be provided in hospital settings, independent facilities, and long-term care facilities. The setting of the patient’s care is dependent on the patient’s wishes, facility policies, the geographic location of independent facilities, and health insurance coverage. The health of the caregiver and their ability to care for the patient as their illness progresses may also dictate the setting of care.
Hospice agencies typically also have respite care arrangements with skilled nursing facilities. Respite care provides short-term relief or some time off for the person providing care.
The hospice nurse will coordinate the arrangements to provide the caregiver with a temporary rest period during which the patient will briefly reside in a nursing facility, and then return home.
Link to Learning
Review this page of resources and fact sheets about palliative and end-of-life care from the American Psychological Association.
Nursing Management
The nurse takes on the role of case manager to coordinate care, advocate for their patient, and teach the family how to provide care as their loved one dies. The nurse typically visits the patient in their home to assess for any changes or worsening of condition, as well as to monitor for any necessary medication and treatment changes. The visits will likely increase each week as the patient’s condition deteriorates. As the patient advocate, it is important that the nurse communicates their assessment findings to each team member to ensure the patient’s needs are being met effectively; it is especially important to communicate with the provider to determine if new orders are needed for the patient’s care.
Link to Learning
The End-of-Life Nursing Education Consortium (ELNEC) project is a national and international education initiative to improve palliative care.
Communication in End-of-Life Care
Communication can be difficult during end-of-life care. During this time, there are a variety of sensitive topics that many people do not feel comfortable discussing; however, it is important to engage in these conversations to ensure the patient’s wishes are followed.
The nurse should plan to answer many questions from the patient and their family while discussing the patient’s needs and terminal diagnosis, conversations that will happen multiple times throughout the care process. It is as important to actively listen as to provide information. The nurse who listens empathetically with compassion and remains sensitive and nonjudgmental is a source of emotional support and an invaluable asset for the patient and family during this difficult time.
When end-of-life care begins, it is important to discuss with the patient and family the necessity of having essential legal documents, such as an advance directive and durable power of attorney. An advance directive enables the patient to outline their wishes for their end-of-life care while they are still of sound mind and able to make these kinds of decisions. A durable power of attorney (DPOA) enables the patient to list specific individuals whom they entrust to make financial and health-care decisions when they are no longer able to do so. If the patient desires to address only health-care matters during end-of-life care, they can choose to utilize a durable power of attorney for health care only.
One of the most difficult conversations to have with a hospice patient concerns their DNR/DNI status. This conversation is typically brought up during the admission to hospice. The patient and family may want to defer this decision until a later time; however, it is vital to establish the patient’s desire regarding this matter at the beginning of their end-of-life care. Once they have confirmed their decision, the patient will sign the DNR/DNI order, or the MOLST/POLST form, to be placed in their record. There are some hospice organizations that do not require their patients to have a DNR status, while others make DNR status a requirement.
Along with securing the patient’s overall wishes for their end-of-life care, it is equally important to discuss the patient’s needs and wishes with each member of the medical team on a regular basis. This will ensure the comprehensive plan of care is revised and updated accordingly, which will ultimately keep the team functioning in unison with the patient’s needs and desires.
Medical Management
The goal of medical management during end-of-life care, especially hospice care, is symptom management. When a patient’s symptoms cannot be relieved completely, it is important to decrease them to a tolerable level and maintain comfort. Symptoms may be related to the terminal diagnosis or to other chronic illnesses or comorbidities. The treatment methods during end-of-life care are both pharmacological and nonpharmacological. While some symptoms may require medications, other symptoms may require interventions such as positioning, guided relaxation, or the use of DME such as a CPAP, BIPAP, or supplemental oxygen.
Common symptoms to be addressed during end-of-life care include pain, shortness of breath, nausea and vomiting, anxiety, weakness, decreased appetite, dehydration, and incontinence. A list of key symptoms in different stages of dying can be found in Table 32.4. Oxygen is often used to relieve shortness of breath and its associated symptoms, such as anxiety, weakness, and confusion. When oral medications become ineffective for pain relief, sublingual or subcutaneous morphine is typically prescribed; morphine is also effective in relieving shortness of breath and associated anxiety. It is important to educate the family to expect symptoms such as weight loss, decreased appetite, cognitive decline, and decreased urinary output; doing so can help prevent excessive worry or panic during end-of-life care.
| Stage | Symptoms | Management Tips |
|---|---|---|
| Early |
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| Mid |
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| Late |
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| Final |
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The hospice agency may provide the patient’s caregiver with a comfort care kit to address and relieve the common symptoms associated with end-of-life care. Common medications found in the kit will vary, but typically include an antiemetic for nausea and vomiting, an antidiarrheal, a stool softener for constipation, acetaminophen for breakthrough pain and fever, and morphine for pain and symptoms associated with shortness of breath.
As the patient nears death, they will not be able to clear respiratory secretions, resulting in a change in breathing pattern. Suctioning or atropine will be utilized to minimize the excess secretions and decrease the noisy, gurgling type of breathing. It is important to discuss this with the family before it occurs to prevent panic and alarm at the onset of this change. At this point, the patient is typically unresponsive and unaware of the change, but the family often has difficulty believing the patient is not in distress. Providing reassurance for the family is essential.
It is noteworthy to mention discharge from hospice care. Some patients improve while receiving hospice care, at which time they are discharged. This can be a joyous experience, as it gives the family more time with their loved one. During this time, the hospice team will periodically check in on the patient. When the patient has a recurring decline and is again eligible due to physical needs, they can be readmitted into hospice.
Ethics and End-of-Life Care
It is the nurse’s responsibility to provide care that is in alignment with the patient’s moral principles, values, and spiritual and cultural beliefs, while also maintaining professional and ethical standards of care, especially as the patient’s condition deteriorates. One of the most difficult decisions during end-of-life care is whether to withhold or withdraw medical interventions. This is why advance directives are critical during end-of-life care; difficult decision-making should be avoided during this time.
Medically Assisted Dying
A patient with terminal illness or severe chronic condition may seek to end their life in order to prevent pain and suffering, due to loss of autonomy, or for similar reasons. While certain terms and methods are often considered to be the same, there are deep distinctions between them. A provider-assisted death typically involves a provider providing a written prescription for a lethal dose of medication for the patient to administer themselves to end their life. This practice is designed for patients with terminal illnesses who are experiencing unbearable suffering, allowing them to control the timing and manner of their death. Currently, provider-assisted death is legally permitted in several U.S. states and jurisdictions, including California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, Washington State, and Washington, DC. In contrast, euthanasia involves an act by a separate individual to cause death (e.g., directly administering the medication); it is illegal throughout the United States. A nurse is ethically prohibited from administering medical aid in dying, but they must be informed and comfortable supporting patients and families in end-of-life situations.
The choice to pursue medically assisted dying generates a spectrum of emotions and ethical dilemmas. It offers a way for individuals to avoid prolonged suffering and assert control over their end-of-life experience. With patients legally having autonomy to control all other end-of-life decisions, it is reasonable to ask why the decision to choose medically assisted dying should be any different. However, it also conflicts with traditional medical ethics, as health-care providers are trained to preserve life rather than end it. This creates a challenging dynamic for health-care providers, who must balance their professional duties with personal beliefs about the morality of ending life. It is crucial for healthcare professionals to conduct self-assessments, maintain professional objectivity, and respect patients' autonomy and decisions, whatever their personal views.