Christy Bowen; Bridget Carey; Jessica Palozie; Maren Reinholdt

Learning Objectives

By the end of this section, you will be able to:

Define palliative care
Identify settings where palliative care is provided
Discuss the importance of collaborative teamwork in palliative care
Differentiate between do-not-resuscitate (DNR) and do-not-intubate (DNI)

A critical concept in health-care, palliation centers on alleviating suffering and enhancing quality of life for patients with serious, often progressive, illnesses. Unlike curative treatments that aim to eradicate disease, palliative care embraces a holistic approach, prioritizing relief from symptoms, pain, and stress. It acknowledges the profound intersection of physical, emotional, and spiritual needs that arise as patients navigate the complexities of their conditions.

Understanding palliation and its core principles is essential for delivering compassionate and effective care. Grasping what palliation entails ensures that health-care providers are dedicated to relieving suffering and improving patient quality of life. Recognizing the various settings where palliation is offered—such as hospitals, hospices, and home environments—allows for the adaptation of care to fit the specific resources and challenges of each context. Effective palliation often depends on a interdisciplinary approach, with health-care professionals collaborating to meet the multifaceted needs of patients and their families. Additionally, understanding critical decisions and distinctions—for example, between do-not-resuscitate (DNR) and do-not-intubate (DNI) orders—is vital for aligning care with patients' wishes and goals. This section aims to highlight how palliation provides comfort and dignity during challenging times, emphasizing its integral role in supporting patients through their illness and end-of-life journey.

Palliative Care

Person- and family-focused care to relieve or reduce symptoms associated with terminal illnesses or diseases that are no longer responding to treatment is considered palliative care. This type of care is meant to bridge the gap between curative care and hospice care, which is care provided when a patient is approaching the end of life. The goal is to provide the patient with the greatest quality of life while maintaining their dignity as the disease progresses.

Evolution of Palliative Care

Palliative care evolved from the hospice movement in the late 1960s, which focused on end-of-life care, and has developed worldwide in a variety of cultures. However, Roman Catholic traditions dating back to the eleventh century recognized the concept of “hospice” as a place of hospitality for the sick and dying. These early hospices are believed to have been established during the Crusades. While hospices were widespread in the Middle Ages, their prevalence decreased as religious orders became more widespread.

The modern usage of hospice as part of the philosophy of end-of-life care originated with the work of Dame Cicely Saunders, who began working with terminally ill patients in London around 1948. Saunders began her work as a nurse but acquired a medical degree in 1957. While working at Yale University in 1963, Saunders discussed the idea of specialized care for the dying, centering on palliative care; she also shared pictures that showed remarkable differences in patients who were receiving palliative care. For instance, patients in hospice care appeared more relaxed and content, often surrounded by family and engaged in meaningful activities, whereas those in traditional hospital settings often looked distressed and isolated. Saunders’s efforts led to a broader discussion in the United States about the need for specialized hospice care at the end of life, emphasizing the importance of providing a supportive and compassionate environment for patients as they approach their final stages. In 1967, Saunders founded the first hospice for terminally ill patients in the United Kingdom, known as St. Christopher’s Hospice (Hospice of Holland, 2023).

Two years later, Elizabeth Kübler-Ross published a book, On Death and Dying, which contained over 500 interviews with dying patients (Kübler-Ross, 1969). Kübler-Ross discussed how everyone deserves the right to make their own decisions related to their end-of-life care. Kübler-Ross testified in 1972 before the U.S. Senate Special Committee on Aging to declare that dying with dignity included one’s right to make their own decisions, including the right to die at home. Kübler-Ross’s findings, combined with Saunders’s earlier work, led to the founding of the first hospice in the United States, in Branford, Connecticut, in 1974. In 1982, Congress created a provision for a Medicare hospice benefit, and in 1986 the Medicare Hospice Benefit was enacted, giving states the option to include hospice services in their Medicaid programs.

Link to Learning

Today, many cultures view quality palliative care as a human right. The World Health Organization (WHO) discusses how palliative care relieves suffering and improves the quality of life for patients.

Settings for Palliative Care

Utilizing an interdisciplinary team of health-care professionals to manage symptoms, palliative care can be provided in a variety of settings, such as hospitals, nursing homes, and specialized clinics; often, it is performed within the patient’s home. The location of treatment is dependent on the patient’s desires, the acuity of care that is needed, and health insurance coverage.

Institution-Based

Palliative care can be institution-based when a patient requires a high level of care. This could include a patient in the intensive care unit, oncology unit, or medical-surgical unit of a hospital. Palliative care can also be utilized in long-term care facilities for a population of patients who are too ill to return home and require skilled care outside of the hospital setting.

Outpatient-Based

Palliative care can also be provided on an outpatient basis for patients who are well enough to remain at home but who may need skilled care in certain settings, such as clinics or a provider’s office. Examples of outpatient-based care might include treatments for pain management, radiation, or infusions.

Community-Based

Palliative care can also be received in the patient’s home from a home health agency. Other examples of community-based care might include intravenous infusion therapy or peritoneal dialysis treatment, with patients receiving IV fluids, medications, or feeding tubes at home. As the goal is not curative, chemotherapy treatments may be discontinued, but nutrition and hydration may be continued.

Palliative Care Team Members

Palliative care requires collaboration. The palliative care team is made up of several different health-care professionals who work closely with the patient and their family and provider (Table 32.1). Typically, the team includes palliative care providers, nurses, social workers, nutritionists, and chaplains. However, the team members may vary based on the patient’s level of care and needs. Consider a patient with chronic obstructive pulmonary disease (COPD) who needs help performing their activities of daily living (ADLs), maintaining their mobility, and managing their pain. Which health-care professionals would likely be on this patient’s interdisciplinary team for palliative care?

Provider	Role in Palliative Care
Primary Care Provider (PCP) Advanced Practice Registered Nurse (APRN) Nurse Practitioner (NP) Physician Assistant (PA)	Provides orders for the patient to receive services through home care or home health agency. Refers the patient to a pain management clinic. Receives updates from the interdisciplinary team to provide optimal patient care.
Pain Management Clinic	Treats and manages the patient’s pain. Communicates with the PCP to collaboratively provide patient-centered care.
Home Care Agency	Provides a health aid to help the patient with their ADLs such as bathing, dressing, grooming, light housekeeping, preparing a meal, and running errands. The frequency of the aid visits will vary depending on the patient’s needs: Example 1: A patient with early-onset COPD who has experienced a slight decrease in endurance but who requires no assistive device for mobility may need only two visits per week. Example 2: A patient with advanced COPD who has experienced a significant decline in endurance and who uses a walker for ambulation and supplemental oxygen during the day and night may need three to five visits per week. Patient care is supervised by a nurse who writes a plan of care and directs the health aides’ delivery of care to meet the patient’s needs. The nurse also advocates for the patient and communicates with each provider to discuss changes in condition and obtain new orders as needed to promote continuity of care.
Home Health Agency	Assesses the home for any specialized equipment or community needs, including resources that may assist with care. Provides physical therapy to help the patient maintain strength and mobility. Offers occupational therapy, dietary consultations, social work services, chaplains, and speech therapy as needed. Provides updates to the interdisciplinary team to report the patient’s progress for continuity of care.

Table 32.1 The Palliative Care Interdisciplinary Team

Nursing Management

Nursing management is a key component of patient care. With palliative care, the nurse may take on the role of case manager and become the hub of communication. As case manager, the nurse is on the front line, speaking with patients and their families to determine the efficacy of care, coordinating care, and updating the plan of care. When communicating with patients and their families, the nurse should always:

allow the patient and family adequate time to reflect and provide an answer to each question.
avoid the impulse to fill in the silence during the communication process; it is more appropriate to simply pause and listen than to interject during the “empty space.”
be sensitive and ask if more time is needed to think about a specific topic or question.
avoid the impulse to give advice.
ask questions, including open-ended questions.
assess understanding by restating, summarizing, or reviewing what was said, both for yourself and the patient. When family members are participating in the patient’s care, have them re-demonstrate with a verbal walkthrough of the specific care.

An example of effective nursing management can be seen in the following example. A patient in a skilled nursing facility is receiving palliative care for the pain associated with cancer; the nurse observes several things during assessments:

The patient is having difficulty swallowing pills and may need an order for crushed or liquid medications.
The pain medication that is currently prescribed lasts only four hours instead of six hours.
A certain position creates more pain for the patient compared to an alternative position.
The patient has difficulty participating in physical therapy when the pain medication is not administered thirty minutes to an hour before the therapy session.

As the hub of communication, the nurse has taken on a role managing the patient’s case and should communicate all these issues to the specific providers involved in the patient’s care. For this case, the nurse may obtain a new order from the provider to administer the pain medication every four hours, increase the medication’s strength, change its delivery method, or switch to a different medication. The nurse should communicate to the nurses on opposite shifts as well as the physical therapy team that the pain medication needs to be administered before a physical therapy session, and should ensure the other nurses, nursing assistants, and members of the physical therapy team are aware that certain positions cause more pain for the patient. These items should be well documented as well as communicated to each service line for quality care and patient safety. It is important to note that while this example relates to a skilled nursing facility, the nurse’s role would be similar if this example pertained to a patient receiving palliative care through a home health agency with physical therapy in their home.

Communication in Palliative Care

Communication skills are essential to providing continuity of care. Frequent communication is key to ensuring that the palliative care team remains informed. Often, this is achieved through regularly scheduled interdisciplinary team meetings, which may also include the patient and their family. It is equally important to listen to the patient and their family to understand their expectations, family dynamics, and communication style, all of which will help create a comprehensive plan of care.

Table 32.2 gives an example of an interdisciplinary team meeting to discuss a patient who had a stroke several months ago and was recently hospitalized for an exacerbation related to congestive heart failure (CHF); the patient is now scheduled for discharge to home, where he lives with his wife.

Team Member	Role in Palliative Care
Primary Care Provider (PCP) Advanced Practice Registered Nurse (APRN) Nurse Practitioner (NP) Physician Assistant (PA)	Actively listens for changes in condition. Asks questions for clarification. Obtains data related to the patient’s inpatient needs as well as upcoming needs related to the discharge. Writes the orders needed to address the items discussed by the team. Ideally, provides comprehensive documentation for the patient’s primary care provider (PCP), which will likely be obtained through a record request from the PCP’s office, to ensure continuity of care after discharge.
Nurse	Notices the patient has experienced difficulty swallowing and asks the provider for an order to obtain a swallow study prior to discharge to prevent choking and aspiration of fluids or food into the lungs. Explains to the dietitian that the patient has experienced difficulty chewing and is in need of a soft diet, while also asking the provider for an order for a soft diet. Discusses the need for new orders for crushed or liquid medications. Explains the need to obtain services from a home care agency to help the patient at home with their ADLs, which will also help with patient safety at home. Will continue to follow the outcome of the patient’s swallow study to ensure the patient’s dietary needs are met. Reinforces with the family the dietitian’s suggestions to prevent weight loss by providing frequent, smaller meals. Will update the plan of care as needed. Is available to answer the patient’s and family’s questions as the discharge date approaches. Provides updates to the interdisciplinary team related to changes in condition, responds to patient and family questions or concerns, and obtains new orders as necessary. Discusses the patient’s medications, including possible side effects observed, to educate the family and ensure continuity of medication administration after discharge. For example, Seroquel could cause dizziness or weakness, which could contribute to a fall. The nurse educates the family about warning signs to look for and asks the provider if the medication needs to be decreased in strength, administered less frequently, or even discontinued. Reinforces the physical therapist’s explanation of decreased endurance and the need for frequent rest periods with both the patient and family. Educates the patient and family about the patient’s increased risk of falls, suggests interventions that could prevent falls, and advises that activities such as bathing, dressing, and grooming be performed during peak times when the patient has more energy. Educates the family to weigh the patient regularly to monitor for fluid overload related to the CHF and reinforce the treatment plan when this should occur. Discusses the discharge instructions and medications with the patient and family on the date of discharge to ensure that the patient has prescriptions for the prescribed medications and that everyone understands the patient’s needs and agrees with the plan of care.
Physical Therapist (PT)	Discusses the increased weakness related to the CHF, including how it impacts the patient’s ability to meet their ADLs. Discusses the patient’s continued right-sided weakness, which impairs his mobility and increases the risk of falls. Explains the benefits of continued physical therapy after discharge with a home health agency of the patient’s choice, and asks the provider for an order. Explains to the family what decreased endurance is and why the patient may need frequent rest periods to recover from activity.
Occupational Therapist (OT)	Confirms with the social worker and family that the patient has adaptive utensils to feed themselves after discharge. Discusses with the social worker and family the need for the following durable medical equipment (DME) at home due to the patient’s increased weakness and impaired mobility: a shower chair and a wheelchair for medical visits. Ensures everyone is aware that the patient has a walker that was used prior to admission for ambulation in the home and explains why, for safety reasons, the patient should always use the walker when ambulating. Actively follow the results of the patient’s swallow study to collaborate with the dietitian for the patient’s dietary needs.
Social Worker	Actively listens to determine the patient’s anticipated needs at home. Coordinates the DME services to ensure a shower chair and wheelchair is ordered for the patient to use at home. Educates the family about community services that would be beneficial: Example 1: Adult day care can promote socialization and provide some rest for the patient’s primary caregiver in the home. Example 2: A Meals on Wheels program can deliver meals to the patient’s home during the day, while the patient’s wife is working outside the home.
Dietitian	Actively listens to determine the patient’s needs. Follows up on the patient’s swallow study in the event thickened liquids need to be ordered. Collaborates to ensure an order for a soft diet is obtained. Explains to the patient and family that the patient’s CHF and increased weakness can make eating a major task that requires a lot of energy, which could result in difficulty consuming large meals. Discusses how smaller, more frequent meals may benefit the patient. Educates the patient and family about the importance and components of a proper diet.
Family Members (Wife and Daughter)	Actively listens to the team’s observations. Ideally, asks questions related to things they do not understand. The inclusivity of being a part of the team provides education for the family to understand how their loved one’s diagnosis affects daily living and patient outcomes. The meeting provides the family with the opportunity to participate in and coordinate the care that their family member needs before and after discharge.
Chaplain	Provides emotional and spiritual support to the patient and family. Addresses any spiritual or existential concerns related to illness or end-of-life issues. Facilitates discussions on advanced care planning and patient’s wishes. Coordinates with the team to address any specific spiritual needs or requests.

Table 32.2 Communication within the Palliative Care Team

Medical Management

In a hospital-based setting or skilled nursing facility, serious situations may arise that require the use of cardiopulmonary resuscitation (CPR) or mechanical ventilation to sustain life. It is crucial to discuss with the patient and their family the options of CPR and mechanical ventilation, including what each procedure involves and under what circumstances it might be used. This discussion is a key component of patient-centered care, ensuring that patients and their families fully understand and can make informed decisions about these life-sustaining interventions. This conversation is important regardless of the patient's stage in their end-of-life journey.

In addition to understanding the procedures themselves, patients and their families should be aware of specific medical orders that outline their preferences for end-of-life care. A do-not-resuscitate (DNR) order indicates that a patient does not want CPR to be conducted if their heart stops. A do-not-intubate (DNI) order indicates that a patient does not want to be placed on a ventilator if they are unable to breathe independently. If a patient does not wish to have life-saving interventions, it is important to have them sign a DNR or DNI order and place it in their file.

Medical Orders for Life-Sustaining Treatment (MOLST) is a program with a goal of improving quality of care for patients at the end of life (Basset Healthcare Network, 2024); some states refer to this program as Physician Orders for Life-Sustaining Treatment (POLST). While the intent of these programs is the same, the applicable forms vary from state to state. Regardless, completing the forms helps patients specify their goals and preferences for their end-of-life care, including:

resuscitation instructions when there is no pulse
intubation and ventilation instructions when breathing has stopped
instructions for hospitalization and transfer
comfort care expectations
treatment guidelines
preferences for the use of antibiotics

The benefit of using a MOLST or POLST form is that it is transferrable among all care settings such as hospitals, nursing homes, and community settings.

The type of medications used in palliative care depends on the patient’s diagnoses and associated symptoms. One of the most common symptoms is pain. The severity and type of pain determine the appropriate medication needed. For mild to moderate pain, acetaminophen is often prescribed. For moderate to severe pain, providers may add narcotics such as codeine to acetaminophen to manage pain. For pain associated with inflammation, such as arthritis, a nonsteroidal anti-inflammatory drug (NSAID) such as ibuprofen or naproxen might be appropriate.

There are many other difficult decisions that a patient and their family will face during their end-of-life care. The nurse should be prepared to offer advice and answer a variety of questions, including:

What is the most effective method of pain management?
When is the right time to begin morphine administration?
Do the benefits of morphine administration outweigh the disadvantages?
Should a feeding tube be ordered when the patient can no longer eat?
Will the use of a feeding tube prolong life and prevent suffering or merely prolong the patient’s suffering?
Should intravenous fluids be provided when a patient can no longer drink and appears dehydrated?
Will the use of intravenous fluids prolong life and prevent suffering or merely prolong the patient’s suffering?

Ultimately, for any decision involving palliative care, the key question is how it will impact the patient’s quality of life and relieve their suffering.

32.1 Palliation