Hospice and Palliative Care: What’s the Difference?

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Introduction   

Hospice and palliative care are unique health concepts often incorrectly used interchangeably. During my career as a hospice and palliative care nurse, I often heard the question, "What's the difference between Hospice and Palliative Care?"  

I usually answered with a common phrase the Hospice and Palliative Care community uses to explain the difference, "All Hospice is palliative care, but not all Palliative Care is hospice." The statement is accurate but still confusing.  

This course aims to shed light on these topics and emphasize the importance of enhancing end-of-life care, but let's start with Merriam-Webster's dictionary definitions.  

• Hospice: "a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained, and family members may be active participants in care” (4). 
• Palliative: "relieving or soothing the symptoms of a disease or disorder without effecting a cure” (4). 

The Merriam-Webster definitions help to clarify the differences further: Hospice is a program, and palliative care is a practice. They are two distinct approaches to providing comprehensive medical care and support for patients with serious illnesses, and they have essential differences worth exploring.  

This course aims to delve into the different types of care, their philosophy, eligibility criteria, duration of services, and common myths and misconceptions surrounding hospice and palliative care. Additionally, it highlights nurses' crucial role as advocates and resources in these specialized fields. 

Hospice Care 

The modern hospice movement originated in the late 1960s in the United Kingdom, primarily through the work of Dame Cicely Saunders. Saunders, a nurse, and social worker, recognized the need for specialized care for patients with terminal illnesses. She founded St. Christopher's Hospice in London in 1967, which became the model for modern hospice care (12). 
 
Saunders emphasized care that was less focused on disease treatment and more focused on an individual's physical, emotional, social, and spiritual needs. This approach prioritized providing comfort, pain management, and dignity for patients nearing the end of life (12). 
 
The concept of hospice care gained international recognition and spread to other countries. By 1974, the first hospice program in the US was formed in Connecticut, and the hospice movement expanded rapidly (11).  

Hospice care was primarily provided by volunteers who went into families' homes to care for their loved ones when no curative care was available. These same volunteers helped write the federal regulations adopted as the Medicare Hospice Benefit (MHB) in 1982 (5). 

It is essential to discuss the MHB because the US government benefit made hospice a fundamental part of comprehensive medical care. It is the benefit through which most patients nearing the end of life receive care, and it has defined how we provide hospice care throughout the United States. 

An integral part of hospice care is visits from a nurse, social worker, chaplain, and nurse aides. In addition, the patient and family have access to a hospice physician specializing in Hospice and Palliative Care (5). Hospice care focuses on providing compassionate, holistic, patient-centered care for individuals with terminal illnesses. The primary goal is to enhance the quality of life for patients and their families by addressing physical, emotional, social, and spiritual needs (5). 

The MHB covers 100% of the financial cost for hospice services, including medications, supplies, and treatments required due to a terminal illness. The medicines commonly covered under the hospice benefit are for treating pain, nausea, anxiety, and other distressful symptoms, such as constipation (5).  

Who can receive this care? 

The MHB was designed for patients who are terminally ill with a six-month life expectancy, as determined by a physician (5). Life expectancy is one of the critical differences between Palliative Care and Hospice Care.  

Healthcare providers, unlike statisticians or actuaries, are unskilled at predicting a six-month or less life expectancy. As part of the hospice federal regulations, local coverage determinations set by government intermediaries help healthcare providers determine who meets the criteria and, therefore, is eligible for hospice.  

Key indicators predicting the end of life due to a specific disease process have been defined so that we can compare each patient to determine their eligibility for hospice care. Some key indicators are activity level, the times the patient has sought emergent care or has been hospitalized in the past six months, weight loss, and neurological status.  

Patients generally receive hospice care when curative care is no longer an option. This is another crucial difference between Hospice and Palliative Care. There are exceptions, commonly for children, where curative and hospice care are provided. This is termed "concurrent" care.  

How long do they receive services? 

The key indicators that hospice physicians use to determine eligibility are based on averages of patients who have died with the specifically defined disease process. However, the average time to death is unreliable when judging how long an individual may live.  

Therefore, hospice care is provided for as long as the patient's condition remains terminal, according to local coverage determinations, and they choose to continue receiving this specialized type of palliative care. In fact, the MHB has no end date, and the duration of services may vary depending on the progression of the illness and the patient's preferences. 

For example, patients with chronic illnesses, such as heart failure, chronic obstructive pulmonary disease (COPD), and Alzheimer's, tend to have a less predictable trajectory of terminal illness due to periods of exacerbation and stability, which are common. Patients with chronic diseases tend to have a longer stay in hospice care. A waxing and waning pattern of decline is less typical with cancer-related disease, and these patients generally use fewer days of hospice care. 

Palliative Care 

The long-held theory regarding palliation, or soothing symptoms as defined by Merriam-Webster, is that if the treatment causes suffering with the result of a cure, the benefit of the treatment outweighs the burden. In other words, a person should be able to tolerate suffering for a positive end result. On the other hand, if no cure is available, suffering is inhumane.  

Palliative Care emerged as an integral part of hospice care, focusing on providing comfort and support to patients with terminal illnesses (14). However, for people without terminal illnesses, some treatments and symptoms of curable diseases are so intolerable that patients may be unable or unwilling to continue curative treatment. Why should patients and families not receive physical, psychosocial, or spiritual support simply because they are not at the end of life?  

The need for Palliative Care beyond hospice was identified in other healthcare settings, such as hospitals and home care. Over time, the philosophy and principles of Palliative Care gained recognition beyond the hospice setting. This led to the development of specialized palliative care services that aimed to provide comprehensive support to patients with serious illnesses, regardless of their prognosis (14).  

In 1990, the World Health Organization (WHO) formally defined palliative care, emphasizing its holistic approach. The WHO defines palliative care as improving the quality of life of patients and their families facing life-threatening illnesses by preventing and relieving suffering through early identification and treatment of pain and other physical, psychosocial, and spiritual problems (13).  

The American Academy of Hospice and Palliative Medicine (AAHPM) was established to promote and advance Palliative Care, and it has now become a recognized medical specialty. Palliative care education programs, certifications, and fellowships have been established to ensure the development of skilled professionals who provide palliative care (14).  

Palliative Care is an essential part of healthcare, aiming to improve the quality of life for patients with serious illnesses and their families. It focuses on relieving symptoms, addressing psychosocial and spiritual needs, and enhancing communication and decision-making throughout the illness trajectory. 
 

Philosophy 

Palliative care aims to improve the quality of life for patients who suffer regardless of life expectancy, a key differentiator from hospice care. Palliative care focuses on symptom management, pain relief, and addressing patients' and their families' physical, emotional, and psychosocial needs. 

Who can receive this care?  

In the modern healthcare system, "palliative" is often used to define comfort care for patients with "serious illnesses." Palliative Care is available to individuals of any age and at any stage of a serious illness, including those undergoing curative treatments. It can be provided concurrently with curative treatments, such as chemotherapy and radiation, another differentiator from hospice care. Individuals with serious illnesses may receive palliative care during a hospitalization, at home, or office visits.  

How long do they receive services? 

Unlike Hospice Care, Palliative Care can be provided for an extended duration even if the patient's condition is not terminal. The duration of services varies based on the individual's needs.  

Common Myths and Misconceptions 

Handling Difficult Conversations 

Conversations, especially regarding end-of-life, are difficult for the clinician, the patient, and the family. Sensitive conversations also take time, patience, and empathy. Often, more time than a general practitioner or clinician has available. In my experience, patients approaching the end of life are often referred to as Palliative Care practitioners because of the practitioner's experience with difficult conversations. I also believe this referral practice is part of the confusion in understanding the difference between Palliative and Hospice Care.  

Palliative Care Practitioners are not the only ones with the time and the skill to broach difficult conversations. Nurses also play a critical role in facilitating difficult conversations about end-of-life decisions, goals of care, and advance care planning.  

Nurses often spend more time with patients and families than other disciplines. The relationship and trust nurses build with patients and caregivers makes them especially adept at starting difficult conversations.  

A nurse must take the following actions before, during, and after a difficult conversation (3).  

• Build a strong relationship with the patient and their family through active listening, empathy, and creating a safe space for open communication. 
• Assess the patient's and family's readiness and preferences to engage in discussions. Ask patients and families questions regarding the amount and detail of information they want and the personspeople that need to be involved in decision-making. This information helps to tailor the discussion.  
• Use practical communication skills such as clear and concise language aimed at providing information in a way that is understandable and sensitive to the emotional needs of the patient and family. 
• Begin the conversation by assessing the patient and family's understanding of the diagnosis and prognosis to address any misconceptions or gaps in knowledge and ensure everyone is on the same page. 
• Engage in a collaborative discussion about the patient's goals and values. Exploring their priorities and preferences regarding treatment options, symptom management, and quality of life helps align the care plan with the patient's values and wishes. 
• Acknowledge and validate emotions, offering support and empathy throughout the conversation. Referral to appropriate psychosocial or spiritual support services may be necessary. 
• Document the discussion and decisions made in the patient's medical records. Follow-up conversations should be scheduled to address any further questions, concerns, or changes in the patient's condition or preferences (3).  

Should you find yourself in a position to start a difficult conversation, the following practical framework may be of assistance (3): 

1. Set aside time and make a plan to minimize interruptions. 
2. Before the conversation, take a moment to center yourself and release stress.  
3. Acknowledge the family and offer support by inquiring about their immediate needs.  
4. Open the conversation by asking what the patient and family know about their condition.  
5. Repeating what they know, ask them how they want to experience the time they have left. 
6. Empathize and allow them time to discuss and consider what they want. 
7. Based on their desires, educate them about the options for care.  
8. Consult with the interdisciplinary team and make appropriate referrals. 

Case Study 

Emily is a registered nurse who works the day shift on a bustling med-surg floor. She has a reputation for excellent communication skills and the ability to handle difficult conversations with empathy and grace, but she admits she never feels comfortable doing so. When she must have a difficult conversation, she uses a structured format to guide her to maintain her composure and empathy. Emily needed to use this framework when the physician asked her to talk to the family of Mr. Johnson about hospice care.  

 
Mr. Johnson was a 75-year-old man admitted with advanced pancreatic cancer. His condition was deteriorating rapidly, and it was clear that curative treatments were no longer effective. Mr. Johnson's wife, Judy, was consistently by his bedside, her worry and sadness evident in her eyes. Emily knew Mrs. Johnson needed a plan because the fear of not knowing can be far worse than the reality. Emily asked her co-workers to cover for her other patients for the next 20 minutes so she could have a conversation about hospice.  
 
Emily approached the room; she stopped momentarily and took a deep, centering breath. She released the day's stress and gave herself space to focus on this task. Emily gathered her thoughts and reminded herself of the framework she would use. She knew this conversation would be challenging but discussing the next steps in Mr. Johnson's Care was necessary. She entered the room with a warm smile, acknowledging both Mr. and Mrs. Johnson. 
 
Emily began by asking how Mr. Johnson was feeling, allowing him to express any concerns or symptoms he was experiencing. She listened attentively, validating his feelings, and reassuring him that his comfort was a top priority. 

After addressing Mr. Johnson's immediate concerns, Emily asked, "Mr. Johnson, what has the doctor told you about your prognosis?" Mr. and Mrs. Johnson began to verbalize that they knew Mr. Johnson was not getting better and was worsening. Mr. Johnson offered that the doctor told them curative care was not an option and that his prognosis may be short. Emily noticed Mrs. Johnson's eyes welling up with tears as Mr. Johnson spoke. Sensing her emotional distress, Emily offered her a comforting hand. 

Emily asked, "How do you see spending your remaining time?" 

Mr. Johnson quickly stated, "I want to go home." 

Mrs. Johnson had a worried look on her face. Emily turned to her, and Mrs. Johnson stated, "I don't know how I can care for him at home."  

Emily reassured Mrs. Johnson that this was a fear expressed by many spouses experiencing similar circumstances. Then, Emily introduced the concept of hospice care, explaining that it could provide specialized support and comfort to Mr. Johnson in the comfort of his own home. She highlighted the benefits of hospice, such as nurse visits, pain management, emotional support, and assistance with daily activities by an aide. 
 
Understanding the gravity of the situation, Mr. Johnson and his wife looked at each other, their love and concern evident. After a moment of silence, Mr. Johnson nodded, expressing his willingness to explore hospice care to enhance his quality of life during this challenging time. 
 
Emily continued the conversation, outlining the next steps and assuring the couple that the hospice team would work closely with them to develop a customized care plan. She provided them with a referral to hospice and assured them that she would be available to answer any questions.  
 
As the conversation came to a close, Emily thanked Mr. and Mrs. Johnson for their trust and assured them that their decision was an essential step towards ensuring Mr. Johnson's comfort and dignity. She could see more lightness in Mrs. Johnosn's eyes. She was standing taller and breathing easier.  

Emily left the room, knowing that this difficult conversation had set the foundation for a new chapter of Care focused on providing the support and compassion that Mr. Johnson and his wife deserved. 
 

Nurse Role as Advocate 

Nurses are the center of the interdisciplinary team, often providing communication and updates from patients and families to other practitioners such as social workers and physicians. The focused time they spend with patients in guided conversations and daily assessments allows nurses to gain a more in-depth understanding of the patient, family dynamics, and care goals.  

A particular time of vulnerability for patients and families is during a serious illness and at the end of life. Nurses are responsible for advocating for patients' rights, respecting their wishes, and facilitating open communication between healthcare providers, patients, and their families. They play a pivotal role in ensuring the patient's voice is heard, and their needs are met.  

Here are some ways nurses advocate for patients:  

• Patient-centered care: Nurses help guide decision-making processes and ensure care aligns with the patient's values and goals when they ensure patients' preferences, values, and goals are at the center of their care (18).  
• Shared decision-making: Nurses facilitate shared decision-making between patients, families, and healthcare providers by acting as intermediaries, ensuring patients' voices are heard and respected during discussions about treatment options, advanced directives, and end-of-life care planning (19).  
• Psychosocial and spiritual needs: Nurses advocate for patients by providing emotional support, facilitating discussions about fears and concerns, and connecting patients with appropriate resources (20).  
• Pain and symptom management: Nurses advocate for optimal comfort by assessing and addressing patients' physical distress, collaborating with the healthcare team, and advocating for timely interventions (21).  
• Patient autonomy: Nurses who involve patients in decision-making processes, including information about treatment options, risks, and benefits, support patients in making informed choices (24). 
• Informed consent: Nurses ensure patients understand the nature of their treatment, potential risks, and alternatives serve to advocate for informed consent (23).
  
• Healthcare disparities: Nurses who identify and address healthcare disparities based on race, ethnicity, socioeconomic status, or geographic location work toward eliminating inequitable healthcare (8,10). 

By advocating for patients during these critical times, nurses can help ensure that patients’ wishes are respected, their quality of life is optimized, and they receive compassionate and patient-centered care. 

Providing Resources  

To provide comprehensive care, nurses must be knowledgeable regarding hospice and palliative care and what each provides. Educating families and patients about their options is a great way to provide emotional support and help them navigate complex medical decisions.  

As part of the MHB and many other insurers, hospice care is funded 100%. As a result, hospices are required to provide a specific set of resources (15). Medicare and private insurers frequently cover the cost of a Palliative Care practitioner on a per-visit basis. Thus, Palliative Care resources can vary widely per program. Knowing what resources are available through your local palliative care program is essential. Below is a chart of common hospice and palliative care resources and their benefits.  

Becoming a Hospice or Palliative Care Nurse 

Even though Hospice and Palliative Care are different, the skills and qualities of successful hospice and palliative nurses are similar. As previously discussed, Hospice and Palliative Care payment differs, with Palliative Care primarily funded by payment to medical practitioners. Because of the funding, it is rare for Palliative Care practices to employ nurses to the same degree as hospice. Many Palliative Care programs do not have nurses in their daily practice but may have them for patient follow-up or coordination of care. 

For this education, we are focused on the requirements of becoming a hospice and palliative care nurse, understanding that positions for Hospice nursing are more prolific than strictly Palliative Care nurses.  

Educational Requirements 

While many nurses can specialize in a specific area of care, for example, geriatric, cardiac, critical care, surgical, or emergency care, hospice, and palliative care nurses care for patients with a wide range of illnesses, ages, and abilities.  

Hospice and palliative care nurses need to understand the ordinary course of numerous conditions in multi-aged patients to anticipate, prepare, and quickly palliate symptoms of the specific disease. They must be skilled in the assessment of patients and able to detect subtle changes in conditions that affect the patient’s plan of care. 

Certain requirements need to be met to become a hospice and palliative care nurse (17). Here are the general requirements: 

• Licensure: Current, unrestricted license as a registered nurse (RN) or licensed practical/vocational nurse (LPN/LVN) in the state where they practice. The specific licensure requirements may vary by state.
  
• Certification: Hospice nurses are often required to have specialized certifications related to hospice and palliative care. The most common certification for hospice nurses is the Certified Hospice and Palliative Nurse (CHPN) credential, offered by the Hospice and Palliative Credentialing Center (HPCC). This certification demonstrates expertise in providing care to patients with life-limiting illnesses. This certification requires two years of hospice experience for eligibility to take the certification test (16). 
  
• Education and Experience: There are no specific education requirements for hospice nurses required by regulatory bodies. However, most hospice agencies prefer nurses with a bachelor’s degree in nursing (BSN) or higher. As written above, hospice and palliative care patients range in age and illness. Therefore, many agencies also prefer nurses with two years of experience in a medical-surgical healthcare setting (17).  
• Training: Hospice nurses must receive comprehensive training in hospice care and be knowledgeable about the philosophy, principles, and practices of hospice and palliative care. The hospice agency typically provides this training and covers pain management, symptom control, psychosocial support, communication, and end-of-life care (17).

Skills and Qualities 

Hospice and palliative care nurses must thrive on working independently since more than 80% of hospice and palliative care is provided in patient's homes. While hospice and palliative care are under the management of the physician, the hospice nurse is the primary assessor and at the patient's bedside.  

Hospice nurses must be organized, have firm boundaries, and be able to systematize their practice to see multiple patients in one day, with the requirements of driving, documenting, communicating with the interdisciplinary team, and providing care according to the individual patient care plan. In addition, they must provide support and education to the patients and their families.  

Nurses in hospice and palliative care settings require excellent communication, empathy, and the ability to navigate complex ethical dilemmas and difficult conversations.  

Conclusion

In conclusion, Hospice and Palliative Care represent two distinct but interconnected approaches to providing comprehensive medical care for individuals with serious illnesses. While hospice care focuses on terminal patients and aims to enhance their quality of life, Palliative Care addresses the needs of individuals at any stage of a serious illness.  

Nurses are crucial in advocating for patients, facilitating difficult conversations, and providing resources to support patients and their families. By understanding the philosophy, eligibility criteria, and duration of hospice and palliative care services, nurses can contribute to the holistic well-being of patients in these specialized fields. 

As society continues to recognize the importance of providing comprehensive end-of-life care and support for patients with serious illnesses, it is crucial to foster awareness, education, and support for hospice and palliative care services. By doing so, we can collectively work towards enhancing the experiences of those facing life-limiting illnesses, offering comfort, compassion, and dignity throughout their journey. 

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