Course

The Roles of a Hospice Nurse and Care Team

Course Highlights


  • In this course we will learn about hospice care in the U.S., and why it is important for hospice nurses to remain up to date on changes and updates within the field.
  • You’ll also learn the basics of living wills and durable powers of attorney (healthcare proxy).
  • You’ll leave this course with a broader understanding of how to provide quality hospice care while avoiding moral distress and/or compassion fatigue.

About

Contact Hours Awarded: 2.5

Maureen Sullivsn-Tevault author

Course By:
Maureen Sullivan-Trevault
RN, BSN, CEN, CDE

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The following course content

Modern medicine has not only prolonged living, but dying, too, especially for patients living with a chronic or terminal illness. Most of these patients will be diagnosed and live with their illness for a prolonged period of time before dying.  

A hospice nurse provides supportive care for terminally ill patients by assessing and evaluating their ongoing needs. Hospice nurses also provide support for both the patient and their family members by working closely with an interdisciplinary team of providers. This knowledge and skill set is essential in the delivery of quality hospice care, to diminish suffering as well as optimize comfort. Ongoing professional education for hospice nurses is essential to ensure that they are equally confident and knowledgeable in this delivery care model. 

Introduction 

The origins of hospice can be traced back to the early 11th century A.D., describing a specific kind of lodging for traveling pilgrims (1). The term ‘hospes’ meant hosts, as in hospitality. In 1095, Pope Urban ll called for the first holy crusade, resulting in thousands of European warriors and pilgrims heading to the sacred land. The early hopes were lodging houses built to accommodate these weary travelers. As the journey to the holy land was dangerous, the focus within the hope lodges quickly turned to care for the sick and dying. This care aimed to comfort the ill until their death or recovery. The concept of (modern-day) hospice was born during these difficult times. 

In the 1950s, a physician named Cicely Saunders changed how we think about the terminally ill. Speaking from her first-hand patient care experiences, she exposed the inadequacies of a hospice setting as a form of end-of-life care. She held a strong belief that physicians, rather than the currently used volunteers and nuns, should be the ones to treat hospice patients. Additionally, she was also instrumental in championing the notion that opioids should be used for pain management in a hospice setting, using such drugs to improve the quality of Life for these patients. Currently, an estimated one-third of Americans who are terminally ill are in hospice – a figure that is growing each year. 

Hospice has been credited with saving Medicare money. Approximately one-third of Medicare costs are spent on end-of-life services. Hospice services significantly reduce those costs by eliminating needless, often costly treatments and limiting the repetitive misuse of emergency room visits. In addition, a hospice program offers a more holistic approach to care, offering an array of services, including pain management, grief counseling, and patient and family services; these are not traditionally offered at primary care offices or emergency department visits. 

 

End-of-Life Care in the U.S. 

“End-of-Life Care, Not End-of-Life Spending” (2) 

People in the U.S. spend a lot of money at the end of Life; about one-quarter of all Medicare spending goes toward care for people during their last year of Life (3). Our healthcare system is currently structured to treat many sick people, often with chronic yet sometimes life-limiting conditions. Ongoing advances in modern medicine, from clinical trials and organ transplants to robotic surgery and stem cell infusions, aim to add years to one’s Life. Patients with multiple chronic diseases can spend upwards of $57,000 per year on their health care. While these care models remain the mission of our healthcare system, the lines are often blurred when it comes to terminal illnesses and end-of-life care. End-of-life spending frequently gets confused with spending money on people who are sick because some of them ultimately die. Healthcare studies have shown “… 2021 end-of-life care cost Americans $430 billion in 2021, or around 10% of the total amount spent on all health care costs put together”. 

As the Medicare program struggles to control expenditures, there is an increased focus on opportunities to manage patient populations more efficiently and at a lower cost. A significant source of expense for the Medicare program is beneficiaries at the end of Life (4). It is estimated that 13%- 25% of Medicare costs are tied to the last year of a patient’s Life. More effective use of palliative care and hospice benefits offers a lower-cost, higher-quality alternative for patients at the end of Life versus traditional hospital settings. 

Medicare costs increase sharply in the last few days of Life, particularly for patients who die in hospitals. Hospice and palliative care offer higher quality care at a lower cost to Medicare if patients enter hospice earlier. These programs are designed to align with a patient’s expressed goals for end-of-life care, items that are often not available in a traditional hospital setting.  

Modern medicine has prolonged not only living but also dying. Recent advances in medicine have converted the once-thought-of grave illnesses like cancer into chronic illnesses (5). As we know it now, the healthcare system must adapt to this reality and offer alternative care models to support this patient population.  

It is valuable for hospice nurses to be aware of the costs of end-of-life care in the U.S. 

 

Quiz Questions

Self Quiz

Ask yourself...

  1. What are some advances in medicine that have greatly improved patient survival rates?
  2. Do you have access to hospice and palliative services at your place of employment?  
  3. What is the process for referring a patient to these services?  

Hospice Care and Medicare 

Hospice care is traditionally designed for people with a life expectancy of 6 months or less. Upon entry into hospice care, the assigned hospice physician, along with the patient’s regular physician (if they have one), must certify that the patient is terminally ill. Please note that if a patient lives longer than the expected six months, they can still qualify for hospice care if the hospice physician recertifies that they are terminally ill. Under the hospice care benefit, the patient can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods (6).  

To qualify for this coverage, a terminally ill patient must have Medicare Part A and sign a statement agreeing to have Medicare pay for palliative care/pain management services rather than curative care (7).  

All Medicare-certified hospice nurses and providers must offer these four levels of care (8, 9). 

 

Level 1: Routine Home Care 

Routine home care is the basic level of care under the Medicare hospice benefit. It covers homebound individuals with Medicare parts A and B currently under a doctor’s care for a specific issue.  

Routine home care services include: 

  • Part-time or intermittent skilled nursing services 
  • Physical therapy 
  • Occupational therapy 
  • Speech-language pathology services 
  • Medical social services 
  • Part-time or intermittent home health aide services 
  • Medical supplies for use at home 
  • Durable medical equipment (Medicare will cover 80% of the cost) 
  • Injectable osteoporosis drugs 
 
Level 2: Continuous Home Care 

Continuous home care is available during times of crisis when a higher level of constant care is warranted for at least eight hours in 24 hours to manage acute medical symptoms. A nurse must provide fifty percent of the care. 

Examples of acute medical symptoms that may warrant continuous care would include: 

  • Unrelieved pain 
  • Severe nausea or vomiting 
  • Severe shortness of breath 
  • Anxiety or panic attacks 

 

Level 3: General Inpatient Care 

Some patients have shorter-lived symptoms so severe that at-home treatment is not adequate, or they may feel more comfortable getting treatment inpatient. The following inpatient care facilities are available under this benefit: 

  • A free-standing facility operated by a hospice company 
  • An inpatient hospice unit within a hospital 
  • A hospice unit in a skilled nursing facility 

 

Level 4: Respite Care 

“Respite care services are more for the family than for the patient. If the patient does not meet the criteria to qualify them for continuous or inpatient care, but the family is having a difficult time, respite care may be an option” (8). Under this benefit, a patient may temporarily be admitted to an inpatient environment to give the family a needed break or respite. 

 

Quiz Questions

Self Quiz

Ask yourself...

  1. Describe the differences between continuous home care versus general inpatient care. 
  2. What types of hospice-related patient conditions would be best treated in each level of care setting? 

Palliative vs. Hospice Care

The majority of Americans (80%) say they would prefer to be cared for and die at home and yet only 36% of us receive hospice care (10). 

 

Palliative care aims to inform patients and their families so they can determine their goals and desired outcomes when faced with a severe or debilitating illness. Patients are usually referred to palliative care at the onset of a severe disease. The palliative care team comprises professionals, including physicians, N.P.s, and R.N.s. In some cases, the team may also include social workers and chaplains.   

This program aims to improve the patient’s and their family’s quality of Life by relieving pain, illness-related symptoms, and the stress of dealing with a debilitating illness. Palliative care can include the management of pain and the reduction of side effects (i.e., nausea, vomiting, and sleeplessness), but may also be of assistance in the following services: 

  • Improving the quality of Life for the patient and the family  
  • Minimizing pain and discomfort  
  • Alleviating emotional distress, anxiety, or depression  
  • Assisting with safety, mobility, and equipment  
  • Spiritual counseling  
  • Empowering patients and caregivers to make the right decisions  

 

What are the differences? (11) 

  • Hospice patients must meet Medicare’s eligibility requirements; palliative care patients are not required to do this. 
  • Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment. Palliative care is comfort care with or without curative intent. 
  • Palliative care can be pursued at diagnosis, curative treatment, follow-up, and end of Life. 
  • Hospice requires that two physicians certify that the patient has less than six months to live if the disease continues to follow its usual course. Palliative care is started at the physician’s and patient’s discretion at any time, at any stage of illness, terminal or not. 
  • Medicare, Medicaid, and private insurance pay 100% of hospice care costs; however, palliative care costs can vary, from office visits to prescription charges.  
  • Hospice care is delivered in an at-home or in-home-like hospice residence; palliative care teams typically work in a hospital. 

 

The American Society of Clinical Oncology (ASCO) has identified a patient who should receive palliative care but not curative treatment; these characteristics also apply to patients with other diseases (12). 

 

  • The patient has limited ability to care for himself. 
  • The patient has received curative treatment and is no longer benefitting from it. 
  • The patient does not qualify for an appropriate clinical trial. 
  • There is no evidence that further treatment would be effective. 

 

ASCO now recommends palliative care combined with the usual oncology care as the standard of care for any patient with advanced cancer based on multiple randomized trials that show better results with concurrent care than with usual oncology care. Citing benefits such as a better quality of Life, better symptom management, reduced anxiety and depression, less caregiver distress, and less aggressive end-of-life care, the ASCO recommends this specialty care should start within eight weeks of a diagnosis. 

Many other patients qualify for palliative care in addition to oncology patients (13). Today, patients with cancer, heart disease, chronic lung disease, AIDS, Alzheimer’s, multiple sclerosis, amyotrophic lateral sclerosis (ALS), and many other serious illnesses are eligible for palliative care., amyotrophic lateral sclerosis (ALS), and many other serious illnesses are eligible for palliative care (13). 

One of the primary goals is symptom management. The disease itself may cause symptoms. However, treatments can cause them as well; for example, chemotherapy drugs may cause nausea and vomiting. Also, narcotic drugs to control pain frequently often lead to constipation. By relieving various symptoms, palliative care can help patients continue their daily lives and improve their ability to undergo or complete medical treatments. By relieving various symptoms, palliative care can help patients continue their daily lives and strengthen their ability to undergo or complete medical therapies. 

 

Quiz Questions

Self Quiz

Ask yourself...

  1. What types of medical conditions could be cared for under palliative care programs? 
  2. When can a patient transition from palliative care to hospice care?
  3. What circumstances would prompt a physician to recommend a transfer from palliative to hospice services?

Roles and Responsibilities of the Hospice Nurse and Care Team

The hospice interdisciplinary team includes the following members: 

  • Chaplain services provide spiritual support. 
  • Hospice aides offer personal care and support to the patient. 
  • Hospice physicians direct patient care treatments and consult with the patient’s regular physician if requested. 
  • Pharmacists direct medication protocols, minimize pain levels, and reduce side effects. 
  • Social Services counsel family members and connect them to community resources. 
  • Hospice nurses provide direct patient care. 
  • Trained volunteers support both the patient and their family members. 
  • Other team members may include massage therapists, art and music therapists, and even acupuncturists (13). 

A hospice team is comprised of an interdisciplinary team of healthcare professionals. They usually meet every 1-2 weeks to discuss the patient’s progress and overall plan of care. This team approach ensures that problems are identified and addressed in a timely manner and that both the patient and family members are supported throughout the course of care. It is vital that the hospice nurse becomes familiar with all members on the care team.

Quiz Questions

Self Quiz

Ask yourself...

  1.  Which hospice team members provide support to family members?  
  2. What hospice programs are available family members? 

Living Wills and Durable Powers of Attorney  

The importance of written legal instructions outlining one’s preferences in end-of-life medical care cannot be overstated; and it is vital for the hospice nurse to be aware of their patient’s wishes. These instructions outline the decisions a person has made for their care if they are unable to speak for themselves. The presence of living wills and durable powers of attorney (health care proxy) paperwork assist the patient, family, and care team in providing the patient the medical care most in line with the written directions. 

Emotions tend to run high during this stressful time, and preplanning for end-of-life care decisions will alleviate much unnecessary turmoil for all affected parties. Additionally, these important decisions regarding medical care choices should not be left to a physician who is unaware of a patient’s values, preferences, and belief system. The completion of such paperwork beforehand significantly reduces everyone’s stress levels during these challenging times. 

The living will document specifies what type of medical treatments you would or would not want if you were unable to communicate or unable to make the decisions and choices on their own. The living will only be used at the end of life if a person is terminally ill or permanently unconscious. These treatments may include resuscitation, artificial nutrition, dialysis, artificial hydration, and mechanical ventilation (15, 16).  

The durable power of attorney paperwork (healthcare proxy) are documents that appoint someone to make medical decisions for you if you are in a situation where you can’t make them yourself. It can also be used to give another person the authority to do financial transactions or sign legal documents that the patient cannot do for one reason or another. 

Additional items

The American Cancer Society has identified two other forms that may be part of a patient’s medical care, dependent on demographics (some initiatives are on a state-by-state jurisdiction) and medical illness severity.  

POLST (Physician Orders for Life-Sustaining Treatment) refers to a set of specific medical orders that a seriously ill person can determine and ask their health provider to sign. A POLST form addresses your wishes in an emergency, such as whether to use CPR, or whether to go to a hospital in an emergency and put on ventilator or stay where you are and be made comfortable. 

Do not resuscitate (DNR) orders mean that if you stop breathing or your heart stops, nothing will be done to try to keep you alive. It is important for not only the hospice nurse, but the entire care team to be aware of this order.  

The primary difference between and POLST and DNR is that POLST covers a variety of end-of-life treatments. A DNR only gives instructions about CPR. With a POLST, seniors can specify if they do or do not want CPR (17). 

Quiz Questions

Self Quiz

Ask yourself...

  1. When should hospice patients complete their living will and durable power of attorney? 

  2. What types of medical treatments are discussed in a living will? 

Pain Management in Hospice

Several pain management scales, including the Numeric Pain Rating Scale, Wong-Baker FACES Pain Rating Scale, and FLACC scale, are used in hospice care. 

Numeric Pain Rating Scale (26) 

The patient rates their pain level on a scale of 0 to 10. Zero means no pain, and ten means ‘the worst possible pain.’ This scale is the most used tool to assess pain intensity in patients ages eight and older. 

Wong-Baker FACES Pain Rating Scale (26) 

The Wong-Baker FACES Pain Scale combines pictures and numbers for painratings. Six faces depict different expressions, ranging from happy to extremely upset. Each is assigned a numerical rating between 0 (smiling) and 10 (crying). The patient is instructed to point to the picture that best represents the degree and intensity of pain. This scale is most commonly utilized in patients ages eight and older.  

FLACC Pain Scale (26) 

The FLACC, or ‘Face, Legs, Activity, Cry, and Consolability’ Scale, was developed to assist healthcare providers in pain assessment in young children who cannot cooperate verbally and in adults who cannot communicate. This pain assessment is based on observations, with zero to two points assigned for each of the five areas. The overall score will vary from 0, indicating a relaxed and comfortable-appearing patient, to 7-10, indicating severe discomfort and painful appearance.  

Pain management is a primary focus in hospice patient care, and the hospice nurse should be aware of all the various types of pain scales that may be utilized. Terminal illness can often bring about extreme pain, whether physical, spiritual, or emotional—adequate pain management is paramount in providing a patient and their family with a quality end-of-life experience.  

Most hospice patients can communicate their pain levels, to some degree, during their hospice care. Other patients may have concurrent disease processes (dementia, for example) that make such communication difficult. The hospice nurse and her team need to be able to accurately assess for various signs and symptoms that may indicate pain. The following list provides an overview of behaviors that may indicate the presence of pain and warrant further investigation (18): 

  • Increased breathing rate 
  • Tightly closed eyes or rapid blinking 
  • An increase in the patient’s systolic blood pressure from their baseline 
  • Holding arm or leg muscles tightly or a rigid body posture 
  • Rocking, fidgeting, or pacing 
  • Resisting care or guarding certain areas of the body when turning 
  • Becoming withdrawn 
  • Becoming more aggressive or easily angered 
  • Crying 
  • Increased confusion 
  • Vocalizations such as moaning, calling out, sighing, and asking for help 

 

Hospice pain management can include the utilization of opioids to control pain; common types include:  

  • Morphine (Roxanol, MS Contin) 
  • Oxycodone (Oxycontin) 
  • Methadone (Dolophine) 
  • Hydromorphone (Dilaudid) 
  • Fentanyl (Duragesic, Abstral, Subsys) (19) 

 

Opioids are the principal class of analgesics used at the end of Life because of their potency, concomitant mild sedative and anxiolytic properties, and ability to be administered by multiple routes; oral, sublingual, and buccal administration is preferred for those able to swallow. 

However, as the disease progresses and pain increases, these medications may be administered via various other routes: transdermal, rectal, vaginal, intravenous, or subcutaneous. 

There has been much discussion over the use of these medications in a hospice setting. Doses will be higher than traditionally prescribed in an acute care/outpatient care setting, and concerns over “addiction” have been expressed. In a hospice setting, though, the patient has a prognosis of fewer than six months; thus, the timeline for possible addiction does not apply. In addition, the interdisciplinary team is continually monitoring the patient on opioid therapy and will adjust/discontinue for harmful medication side effects. 

Another highly discussed concern over opioid medication protocols in a hospice setting is that of hastening a patient’s death. Studies have shown that early and proper use of opioid pain management in hospice care can enhance a patient’s quality of Life.  

Healthcare professionals unfamiliar with hospice medication protocols may feel uncomfortable with both the dosage and frequency of pain management therapy administrations. For example, in acute care and outpatient settings, morphine sulfate is used sparingly in doses that rarely exceed single-digit milligrams and given in ‘as needed’ increments. In the terminally ill cancer patient under hospice care, morphine has been prescribed at 30 milligrams every 3 to 4 hours (oral) or 10 milligrams (parenteral). In an acute care setting, Hydrocodone is typically administered in tablet form at 5 milligrams per tablet; however, a typical dose in a hospice setting maybe 25-30 milligrams.  

Hospice nurses must receive ongoing education regarding pharmaceutical options for their patients. When pain is reduced to an acceptable level, the person can eat, sleep, and maintain independence, dignity, and self-care; these conditions are the goal of hospice-centered care. 

Managing Emotional and Spiritual Pain  

In addition to physical pain, hospice patients may also experience emotional and spiritual pain. The interdisciplinary team approach offered by hospice can effectively manage these various aspects of pain. Emotional pain/anxiety often occurs hand in hand with physical pain. Anxiolytic and sedative medications, such as Valium (diazepam) or Ativan (lorazepam), can be prescribed to treat associated agitation and anxiety. In addition, the chaplain and social worker will be instrumental in assessing the needs of hospice patients experiencing emotional pain. However, the hospice nurse must also be aware of these potential symptoms.  

Quiz Questions

Self Quiz

Ask yourself...

  1. Can you describe behaviors that may indicate the presence of pain in a hospice patient?

  2. Can you list commonly used opioids for pain management in a hospice setting?  

  3. Discuss alternate routes of administration for pain medication when a hospice patient is no longer able to tolerate oral intake. 

  4. What issues may cause a hospice patient emotional pain and anxiety? 

Spiritual, Psychological and Family Issues in Hospice Care

The diagnosis of a terminal illness can be overwhelming for the patient and family members on many levels (19). When someone is diagnosed with a terminal illness, people will naturally struggle through a variety of emotions, including anger and depression. Regrets about how Life was lived and focusing on missed opportunities can lead to sadness that greatly diminishes a patient’s quality of Life.  

Family members may also experience equal levels of sadness, stress, and anxiety but are hesitant to burden the patient with such concerns. Hospice programs offer several programs for family members during this difficult time. Trained counselors are part of the interdisciplinary team, as well as structured bereavement services. Hospice bereavement programs are expected to provide advanced grief support and education to their hospice families for at least thirteen months following a patient’s death, including individual, family, and children’s counseling. Additional bereavement services may include follow-up telephone calls, a letter or card sent at the time of the death and the anniversary of the death, mailing brochures or other educational materials about grief, and individual therapy or group therapy.  

Patient and family education is ongoing throughout the hospice care continuum. Respite care for the caregiver (up to 5 days) is also available under hospice services. Hospice respite occurs while the patient is cared for in a Medicare-certified inpatient facility. Caregivers often experience depression, fatigue, and anxiety during hospice treatment. The respite program allows them time away to take care of themselves by getting plenty of rest and stepping aside from the demands of caregiving. 

 

Quiz Questions

Self Quiz

Ask yourself...

  1. What are some bereavement services available through hospice? 

  2. Describe services under a hospice respite care program?  

Signs and Symptoms of an Actively Dying Patient

As stated, ongoing patient and family education is essential during hospice care. An important area of such education is that of the active dying process. To support family members during this challenging time, the hospice nurse should know the various aspects of the active dying process. Patients and their families should understand the changes during their lives’ final hours/days and what supportive treatment options are available to ease this transition. Although individuals respond differently during active dying, some common changes occur in most hospice patients (21).  

Physical changes may include weight loss and decreased body temperature and blood pressure. Patients may have little desire to eat or drink, move and speak less, and the skin on their hands and feet may become pale, gray, or purple.  

Changes in respiratory patterns may also occur in the final hours preceding death. Lung sounds may include frequent coughing or noisy breathing (called ‘rattles’). Rate changes may go from ordinary to rapid breaths, followed by periods of apnea (Cheyne-Stokes breathing). 

Changes in the level of consciousness often occur in the final hours of Life. Decreases in consciousness and periods of unresponsiveness are standard; some patients also experience hallucinations, illusions, and delusions during this time.   

The hospice nurse must be aware of these ongoing changes to comfort the patient and their family. Hospice care treatment protocols provide therapies for many of these symptoms and lessen the distress all involved in the process feel.  

 

Quiz Questions

Self Quiz

Ask yourself...

  1. Describe physical changes in a hospice patient that may occur in the final hours of life.
  2. What education/guidance should be given to family members regarding signs of approaching death in their loved one? 

Compassion Fatigue and Moral Distress in Healthcare Professionals

Although hospice care is a very much needed part of modern medicine, it is often stressful, uncomfortable, and frustrating for those on the front-lines of providing care. Conflicts with other healthcare providers, controversial end-of-life decisions, and excessive workloads can all cause moral distress for a hospice nurse (22).   

Moral distress is the discomfort, angst, and frustration related to situations in which we think we know the ‘right thing’ to do, but cannot act on it – this is endemic to palliative care and hospice work.  

Some examples of situations in palliative care include administering aggressive chemotherapy to a dying cancer patient, or following the treatment wishes of a family that are incongruent with the patient who cannot speak for themself. 

Being self-aware is one of the most important skills to possess as a hospice worker, as it can  lower the risk of moral distress, build moral resilience, and help providers remain emotionally available to themselves, patients, family members, and co-workers. These strategies may include early identification of issues that are causing an emotional response and seeking to find ways to resolve them. Additionally, hospice workers must remain open-minded and continuously challenge themselves to see various perspectives regarding an outcome or plan of care; by doing so, it allows them to better understand and appreciate the multiple opinions, expectations, and wishes from patients and/or their families.

Research has shown that moral distress may eventually lead to burnout and an increase in nurses’ intentions to leave their jobs due to the stress and psychological impact (23). Hospice nurses, administrators, and educators must therefore be able to recognize moral distress and appropriately intervene. 

Professionals who care for patients with serious illnesses should have a well-developed sense of empathy. This need for continuous compassion can harm even the best-intentioned healthcare professional if there are not enough self-care behaviors in place to balance the need. Fear, grief, conflict, and desperation are common features near the end of life; these emotions run high, and healthcare professionals are not immune to them.  

Compassion fatigue has been defined as a deep physical, emotional, and spiritual exhaustion accompanied by acute emotional pain (24). Common symptoms of compassion fatigue may include the following: 

  • Anger 
  • Depression or anxiety 
  • Gastrointestinal problems 
  • High blood pressure 
  • Addictive behaviors 
  • Difficulty sleeping 
  • Physical or emotional exhaustion 
  • Irritability 
  • Diminished self-esteem 

Compassion fatigue is a well-known occupational hazard.  While self-care methods can help offset compassion fatigue to a degree, other methods have been shown to help compassion fatigue even more so. Mindful ways of working, along with mindful meditation and journaling, have been shown to reduce stress, enhance well-being and increase empathy in healthcare professionals. 

Professionals who established rituals around their patients’ deaths (including praying, lighting candles, and attending patients’ funerals) scored higher on a compassion-satisfaction scale and lowered on a burnout scale. Finally, the usual antidotes to compassion fatigue, including proper nutrition, adequate rest/sleep, and routine daily exercise, all lower the risk of both caregiver fatigue and burnout.  

Quiz Questions

Self Quiz

Ask yourself...

  1. Describe symptoms of hospice nurse burnout.
  2. Discuss issues that cause moral distress in healthcare professionals. 
  3. Describe self-care behaviors for healthcare professionals. 

Case Study 

Mark is a 64-year-old male newly diagnosed with colon cancer. He has a preexisting medical history of COPD. He is admitted to the hospital four days after completing his first (outpatient) chemotherapy treatment. He states he was feeling pretty good initially, but nausea and vomiting occurred on day 2 and it was “too much to handle.” He has spent the last two days in a recliner, too tired to shower. He admits a poor intake of both food and fluids and that he would have gone to see his doctor, but “my neighbor wasn’t able to get time off of work to take me” {your patient lives alone}. 

In addition to prescribed medical interventions (including IV fluid hydration and nutrition, pain management), what other consultations/services should be considered for your patient?  

Fast forward approximately one year.  

Your patient, Mark, has completed both chemotherapy and radiation therapies. Unfortunately, recent CT scans have confirmed metastasis to both the liver and spine. He has been admitted for intractable back pain after experiencing a ground-level fall at home. Mark met with his oncologist this morning and informed him that he doesn’t want to take anymore chemotherapy, as the long-term prognosis is poor. A hospice consultation has been ordered. As the hospice nurse, Mark asks you the following questions:  

“What can hospice do for me; the doctor said my prognosis is poor, even with further chemotherapy?”  

“Will I have to leave my home in order to get help? I just want to go home.” 

How will you explain hospice services to this oncology patient?  

What are the benefits of hospice care for this patient?   

Who will absorb the costs associated to hospice care for this patient? 

Your patient has expressed concerns about telling his family about his choice to forego further cancer treatment.   

How can hospice assist him in this area?  

What hospice team members will be available to his family?  

What bereavement services will be available to his family after his death? 

Working with terminally ill patients is often challenging and emotionally draining. After several weeks of challenging patients, heavy caseloads, and multiple deaths, you and several staff members are expressing increasing frustration with their jobs, as well as frequent headaches and sleepless nights. 

What are some self-care activities and behaviors that healthcare providers can implement to lower their risk of compassion fatigue and caregiver burnout? 

Additional Resources for a Hospice Nurse

The Hospice and Palliative Nurses Association (HPNA) is an association of nearly 10,000 healthcare professionals dedicated to advancing expert care in serious illness. Membership benefits include certification examination discounts, online subscriptions to professional journals, access to special interest groups, dedicated blogs, and member search platforms. There are over 50 chapters across the U.S., with networking opportunities through local chapter meetings and other events. 

The Hospice and Palliative Credentialing Center (HPCC) offers specialty certification to hospice and palliative nurses, and other members of the interdisciplinary team. Currently, there are six separate hospice and palliative certification exams for advanced practice nurses, registered nurses, pediatric hospice and palliative nurses, licensed/vocational nurses, nursing assistants, and those dealing with perinatal loss. Over 14,000 health care professionals hold HPCC credentials.  

  1. The Advanced Certified Hospice and Palliative Nurse (ACHPN®) examination is designed for experienced hospice and advanced palliative practice registered nurses. 
  2. The Certified Hospice and Palliative Nurse (CHPN®) examination are designed for experienced registered nurses. 
  3. The Certified Hospice and Palliative Pediatric Nurse (CHPPN®) examination is designed for experienced hospice and palliative pediatric registered nurses. 
  4. The Certified Hospice and Palliative Nursing Assistant (CHPNA®) examination is designed for experienced hospice and palliative nursing assistants. 
  5. The Certified in Perinatal Loss Care (CPLC®) examination is designed for professionals in a health care role that provides to those experiencing perinatal loss. 
  6. The Certified Hospice and Palliative Licensed Nurse (CHPLN®) examination is designed for experienced hospice and palliative licensed practical/vocational nurses. 

References + Disclaimer

  1. Adrien, C. (2017, June 30). A History of Hospice: A Timeline of Medicine’s Oldest Discipline. 1-800-HOSPICETM. https://www.1800hospice.com/end-of-life-care/history-hospice/ 
  2. Jha, A. K. (2018, July 13). End-of-Life Care, Not End-of-Life Spending. End of Life | JAMA Health Forum | JAMA Network. https://jamanetwork.com/channels/health-forum/fullarticle/2760146  
  3. Who pays for palliative care? An overview of palliative care cost and payment options – Caring.com. (2023, November 16). Caring.com. https://www.caring.com/resources/palliative-care-cost-and-payment-options/  
  4. The Dartmouth Atlas of Health Care (2017). Care of chronically ill patients during the last two years of Life. https://www.dartmouthatlas.org/interactive-apps/data-by-hospital/patient-experience/  
  5. Mph, Z. S. (2024, March 25). Does Medicare cover palliative care?https://www.medicalnewstoday.com/articles/does-medicare-cover-palliative-care  
  6. ] Duncan, I., Ahmed, T., Dove, H., & Maxwell, T. (2019, March 18). Medicare Cost at the eEndof Life. PubMed Central (PMC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6610551/ 
  7.  Tibbles, C. (2014, March 25). Death and Dying in the United States. Palliative Care: Education & Training. https://palliative.stanford.edu/overview-of-palliative-care/death-and-dying-in-the-united-states/ 
  8.  Medicare.gov. (n.d.). How hospice works | Medicare. Retrieved March 7, 2021, from https://www.medicare.gov/what-medicare-covers/what-part-a-covers/how-hospice-works 
  9. MedicareInteractive.org. (2019, November 12). Hospice basics. Medicare Interactive. https://www.medicareinteractive.org/get-answers/medicare-covered-services/hospice/hospice-basics 
  10. Morrow, A. (2020, February 17). Medicare Covers Four Distinct Levels of Care for Terminally Ill Patients. Verywell Health. https://www.verywellhealth.com/levels-of-hospice-care-1132297 
  11. Medicare.gov. (n.d.-a). Hospice Care Coverage. Retrieved March 8, 2021, from https://www.medicare.gov/coverage/hospice-care 
  12. Clark, S. (2019). What is Hospice and Palliative Care? CHAPCA- CALIFORNIA HOSPICE AND PALLIATIVE CARE ASSOCIATION. https://www.calhospice.org/what-is-hospice-and-palliative-care-?gclid=Cj0KCQiAs5eCBhCBARIsAEhk4r4LeuYdqCZRIh2MiUIZVBgTlFFj0eeHyw9pdo2_oPVsH7Pw5HO-ZSUaAr9nEALw_wcB#palliativecare 
  13. Vitas Healthcare. (n.d.). Hospice vs. Palliative Care: What’s the Difference? VITAS | VITAS Healthcare. Retrieved March 8, 2021, from https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference  
  14. American Society of Clinical Oncology. (2021, March 11). Palliative Care in Oncology. ASCO. https://www.asco.org/practice-policy/cancer-care-initiatives/palliative-care-oncology 
  15. Robinson, J. (2019, August 16). When Is Palliative Care Appropriate? WebMD. https://www.webmd.com/palliative-care/when-is-palliative-care-appropriate  
  16. Pathways Home Health and Hospice. (2017, May 2). Hospice: Exploring Key Concepts of the Interdisciplinary Team. https://pathwayshealth.org/hospice-topics/hospice-exploring-key-concepts-interdisciplinary-team/  
  17. Hospice Interdisciplinary Care Team. (n.d.). VITAS Healthcare. https://www.vitas.com/care-services/hospice-interdisciplinary-care-team#:~:text=The%20members%20of%20this%20interdisciplinary,chaplain%2C%20volunteer%20and%20bereavement%20specialist. 
  18. GetPalliativeCare.org. (2017, October 2). Health Care Proxy vs. Living Will. Get Palliative Care. https://getpalliativecare.org/health-care-proxy-vs-living-will/. 
  19. Healthcare Proxy vs. Living Will: What’s the Difference? – SmartAsset | SmartAsset. (2023, May 27). https://smartasset.com/estate-planning/healthcare-proxy-vs-living-will 
  20. American Cancer Society. (2019, May 13). Types of Advance Directives. https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/types-of-advance-health-care-directives.html 
  21.  Daily Caring. (2021, January 29). Which End-of-Life Form Is Needed? POLST vs DNR. https://dailycaring.com/which-end-of-life-form-is-needed-polst-vs-dnr/ 
  22. Crossroads Hospice & Palliative Care. (2017, September 7). All You Need to Know About Pain Management in Hospice. https://www.crossroadshospice.com/hospice-palliative-care-blog/2017/september/07/all-you-need-to-know-about-pain-management-in-hospice/  
  23. Sinha, A., Deshwal, H., & Vashisht, R. (2023, February 26). End-of-life evaluation and management of pain. StatPearls – NCBI Bookshelf. https://www.ncbi.nlm.nih.gov/books/NBK568753/  
  24. Broglio, K., & Cole, B. (2011, December 20). Pain Management and Terminal Illness. Practical Pain Management. https://www.practicalpainmanagement.com/resources/hospice/pain-management-terminal-illness  
  25. Palliative care methods for controlling pain. (2023, November 21). Johns Hopkins Medicine. https://www.hopkinsmedicine.org/health/wellness-and-prevention/palliative-care-methods-for-controlling-pain  
  26.  Hospice of the North Coast. (2017, November 14). HOSPICE HELPS WITH THE EMOTIONAL, SOCIAL, AND SPIRITUAL NEEDS OF PATIENT AND FAMILY. https://hospicenorthcoast.org/2017/11/13/hospice-helps-with-emotional-social-and-spiritual-needs-of-patient-and-family/  
  27. Menis Vigna, P., De Castro, I., & Rego Lins Fumis, R. (2020, June 3). Spirituality alleviates the burden on family members caring exclusively for patients receiving palliative care. NIH National Library of Medicine. Retrieved April 15, 2024, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7271458/ 
  28. Hospice Foundation of America. (n.d.). Hospice Foundation Of America – Signs of Approaching Death. Retrieved March 11, 2021, from https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death  
  29.  Leff, V. (2018, January 18). It’s Not the Death, It’s the Dying: Moral Distress in Palliative Care. Pallimed. https://www.pallimed.org/2018/01/its-not-death-its-dying-moral-distress.html  
  30. American Academy of Hospice and Palliative Medicine. (n.d.). Summer 21 Feature | AAHPM. 2024. https://aahpm.org/quarterly/summer-21-feature  
  31. Karakachian, A., & Colbert, A. (2017). Moral distress: A case study. Lippincott Nursing Center. https://www.nursingcenter.com/journalarticle?Article_ID=4345476&Journal_ID=54016&Issue_ID=4345459 
  32. Gartley, C. E. (2023, December 4). Moral distress and end-of-life care. American Nurse. https://www.myamericannurse.com/moral-distress-and-end-of-life-care/  
  33. VITAS Healthcare. (n.d.). How Hospice Workers Can Overcome Compassion Fatigue. Retrieved July 3, 2021, from https://www.vitas.com/for-healthcare-professionals/making-the-rounds/2017/november/how-hospice-workers-can-overcome-compassion-fatigue  
  34. Riley, G.F. & Lubitz, J.D. (2010). Long-Term Trends in Medicare Payments in the Last Year of Life. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2838161/ 
  35. Jacques, E. (2020). 10 Common Types of Pain Scales. https://www.verywellhealth.com/pain-scales-assessment-tools-4020329 
 
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