Objectives: ≥92% of participants will understand palliative care and hospice practices.
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Objectives: ≥92% of participants will understand palliative care and hospice practices.
After completing this continuing education course, the participant will be able to meet the following objectives:
In the United States, there are approximately 2.5 million deaths annually. The most common causes of death include cardiovascular disease, all cancers combined, unintentional injuries, chronic obstructive pulmonary disease, congestive heart failure, and cerebrovascular disease. Note that cardiovascular disease is at the top of that list.
Individuals who do not make plans for end-of-life care tend to experience medical therapies and interventions inconsistent with their preferences, increased psychological distress, and increased utilization of healthcare resources that do not necessarily lead to improved quality of life. Also, lack of planning for end-of-life care leaves the surviving family and friends unprepared for the transition and can make the bereavement process much more difficult.
Noncontagious diseases are the most common causes of death worldwide, according to the World Health Organization (2021) As such, palliative care mainly focuses on noncontagious causes of death. Most adults who utilize palliative care services are adults who live in higher-income countries.
The WHO estimates that 78% of adults and 98% of children needing palliative care live in low to middle-income countries. However, palliative care availability and utilization are highest among adults who are in higher-income countries (WHO, 2020).
Dame Cicely Saunders is the founder of the modern hospice movement. She was first inspired to do the work while working as a social worker. She then went to attend nursing school and eventually medical school. She officially developed and established the concept of "total pain," which was formally defined in 1964. She defined it as "including physical symptoms and mental distress and social or spiritual problems." Dr. Saunders established the first hospice in the United Kingdom in 1967 named St. Christopher's Hospice. She worked on emphasizing research into quality end-of-life care and developed clinical programs. She established that regularly scheduled opioid doses could enable the patients to remain alert and responsive while receiving adequate pain control through her research work (Tatum & Mills, 2020). St. Christopher's Hospice became a model for other palliative and hospice care facilities. The term "palliative care" was coined in 1974 by Balfour Mount in Canada and became the coined term of the collective, international movement. Specifically, the term palliative care was established due to the negative connotations associated with "hospice" in French-speaking Quebec. In the 1980s, medical associations and scientific journals in palliative care in the UK were established, and palliative care was recognized as an international medical specialty (Loscalzo, 2008).
The World Health Organization defines palliative care as an approach that focuses on improving the quality of life of patients and their families who are facing challenges related to life-threatening illnesses through the prevention and relief of suffering by early identification and correct treatment of pain and other needs, including physical, spiritual, or psychosocial needs (Connor et al., 2021).
Palliative care intends to hasten neither or postpone death. Instead, it affirms life and focuses on dying as a normal process. It integrates the psychological and spiritual care needs related to life-threatening illnesses that patients and their families need. Palliative care offers patients and their families a support system to help patients live an active life as much as possible until they transition into death. Under the umbrella of palliative care, patient families can receive bereavement counseling if needed. Note that palliative care services may be needed anytime along with an illness, even early in the course of illness, and can be used with other interventions intended to prolong life, such as radiation therapy or chemotherapy (Sleeman et al, 2019).
Providers are encouraged to offer palliative care services in tandem with curative therapies when the patient is first diagnosed. It is important to apply palliative care interventions early on because some patients may suffer from the consequences of the illness and the consequences of the treatment interventions.
Most dying patients express that they want to die at home with some level of comfort and dignity. Also, they express that they would like to have an opportunity to say goodbye to their friends and family members before they die. As patients face end-of-life decisions, freedom from pain and other symptoms is the focus of palliative care while giving them a sense of control over their end-of-life decisions without unnecessarily prolonging the dying process. Ideally, patients should be referred to palliative care services at the time of diagnosis with their chronic condition. Currently, referrals to palliative care are done later in the disease course.
Hospice is defined as end-of-life care provided by healthcare workers and other personnel giving patients medical, spiritual, and psychological support as they deal with terminal illnesses as they transition towards the end of the patient's life. The goal of hospice care is to help people who are dying have comfort, peace, and dignity at the end of their lives. Hospice caregivers work to keep the patient as comfortable as possible while providing pain control during their transition.
Hospice is essentially a philosophy and practice of healthcare that focuses on the transition towards the end of the patient's life by addressing symptom management while optimizing the quality of life for the patient and their loved ones. The goal of hospice care is to provide an improved quality of life rather than prolonging life or curing an illness (House, 2021).
The hospice philosophy understands that a dying patient suffers from their terminal illness and impairments their prognosis has upon their physical, psychological, spiritual, and social status. These multifaceted impairments experienced by most terminally ill patients have been termed the patient's "total pain" (House, 2021). The hospice practice involves an interdisciplinary team that aims to address the patient's physical, psychological, spiritual, and social needs.
Hospice services are underused, with referrals often made very late during the patient's disease, with 28% of patients having seven or fewer days of service on hospice (House, 2021).
Palliative medicine provides a framework for pain and symptom management in all patients who are seriously ill. It can be seamlessly merged with curative therapies such as organ transplantation. On the other hand, hospice shares the same philosophy with palliative care to alleviate suffering in the life of a seriously ill patient. It also focuses on the importance of patient-centered care while encouraging shared decision-making to provide care to patients in keeping with their goals and values. In the United States, the financial reimbursement system dictates that patients on hospice must have an anticipated lifespan of 6 months or less. The Medicare hospice benefit prescribes this definition.
Consequently, hospice services have rigorous admission criteria: a physician would certify that the patient has six months or less to live if the disease follows the natural course. Additionally, unlike palliative care, the treatment goal is directed more towards comfort than cure in hospice. It is important to recognize that the Medicare hospice benefit does not mandate or require patients to forgo the desire to pursue heroic life-prolonging measures, including experimental research interventions or even a desire for future hospitalizations. If a patient lives beyond the estimated six months, the hospice benefits can be renewed through Medicare using their recertification process.
The second difference between hospice and palliative care focuses on where the care is provided. Hospice care is primarily provided in a patient's home in the United States. Occasionally, it is provided in residential facilities or long-term facilities. Palliative care, on the other hand, is a medical subspecialty. Like other subspecialties such as pulmonology and oncology, there are strict guidelines for reimbursement, including where the care is provided. In general, most palliative care services occur in an inpatient setting. In summary, hospice care incorporates palliative care but not all palliative care is hospice care. In other words, hospice care is a subset of palliative care.
In 2019, the World Health Assembly passed a resolution on palliative care. The need for palliative care services continues to increase rapidly worldwide due to the aging population, increased incidence of cancers and other non-communicable diseases, and the current COVID -19 global pandemic. There has been some progress in meeting global palliative care needs since the initial publication of the 1st edition of the worldwide perspective on palliative care in 2014. However, there is a persistent gap in the access to care for patients with palliative care needs (Sleeman et al., 2019).
The need for palliative care is expected to double worldwide by 2060. The need for palliative care and access to palliative care are not completely congruent. Access to quality palliative care is minimal outside of Europe, Australia, and North America, even though 76% of the need for palliative care is in low- and middle-income countries (Sleeman et al., 2019).
Although the need for palliative care was predominantly fueled by cancer-related palliative care in the early 1980s, over the past three decades, there have been increasing palliative care needs related to chronic progressive diseases such as HIV and AIDS, chronic respiratory diseases, and congestive heart failure, etc.
Hospice focuses on caring and not curing. Hospice care is typically provided in the patient's home but available in freestanding hospice facilities, nursing homes, and even hospitals. Although hospice patients can be admitted at any level of care, a change in their medical status may warrant a change in their level of care. The Medicare hospice benefit affords patients four levels of care to meet all clinical needs: inpatient respite care, continuous home care, general inpatient care, and routine home care. (NHPCO, 2020).
Routine home care is the most common level of hospice care. Patients in this care group have decided to receive hospice care in their homes.
Patients in this group receive care between 8 to 24 hours a day to manage their pain or other acute medical symptoms that may arise. Most of the services provided to patients in this group are mainly nursing care, caregiver, or hospice aide services, intending to keep the patient safe and comfortable at home during the management of a pain crisis or symptoms crisis.
Inpatient respite care provides the primary caregiver relief in caring for the patient. It helps prevent caregiver burnout. Respite care can be provided in a hospital, hospice facility, or even a long-term care facility. Typically, these facilities have 24-hour nursing personnel available to attend to patients' needs.
General inpatient care is available for pain control or other acute symptom management, which can not be performed in other hospice settings. Typically, patients are upgraded to this level of care when managing symptoms in other settings is not possible. General inpatient care can be provided in a hospital, nursing facility, or other inpatient facilities.
The number of Medicare beneficiaries has progressively increased over the last five years of data available from 2014 to 2018, from 1.32 million people in 2014 to 1.55 million people in 2018. Of all the Medicare decedents in 2018, 50.7% of them received one day or more of hospice care and were enrolled into hospice care at their time of death (NHPCO, 2020).
In 2018, a staggering percentage of the patients on hospice were Caucasian 82%, 8.2% were Black or African American, 6.7% were Hispanic, 1.8% were Asian or Pacific Islander, 0.4% were Native American, and 0.5% were listed as other (NHPCO, 2020).
The top 3 diagnoses for hospice decedents in 2018 were cancer, circulatory or heart disease, and dementia. The average lifetime length of stay for hospice in 2018 was 89.6 days. Medicare paid hospice providers a total of 19.2 billion dollars for care provided in 2018, corresponding to an increase of 7.2% over the previous year (NHPCO, 2020).
The palliative care and hospice teams comprise a multidisciplinary group that consists of physicians, physician assistants, nurse practitioners, registered nurses, certified nurse's assistants, home health aides, social workers, chaplains, bereavement counselors, and sometimes community volunteers. Although the palliative care team works closely with the primary medical team, it does not replace it. In essence, the main focus of the palliative care team is to relieve and prevent suffering to optimize the quality of life for both patients and their families. The multidisciplinary team has this goal to target the patient's overall prognosis, whether days, weeks, months, or years. One of the preliminary goals of the interdisciplinary team is to identify patients in need of palliative care services, and educating ordering providers, patients, and family members is an integral part of that process.
The hospice/palliative care physician has medical and administrative roles. In the ideal setting, the hospice physician is board-certified in Hospice and Palliative Medicine. Many hospice physicians provide care in the patient's home. They can act as a liaison between the patient and other physician providers (such as the patient's primary care physician) in assisting with the patient's symptom management. Occasionally the board-certified Hospice or Palliative Care physician will have mid-level clinical providers such as advanced registered nurse practitioners and physician assistants working under their supervision.
It is not typical for the referring or primary care doctor to remain consistently involved in a patient's end-of-life care. However, they may become involved with monitoring symptoms, ordering skilled nursing care, or medications.
The registered nurse is typically the primary case manager, coordinates the interdisciplinary team, and provides skilled nursing care. In the ideal setting, hospice nurses are ideally certified in hospice and palliative care and visit patients regularly based on the patient's needs. Occasionally, hospice or palliative care teams may use licensed vocational nurses (LVN) or licensed practical nurses (LPN) to provide intermediate-level nursing care for patients under a registered nurse's delegation.
The social worker assures the patient's psychosocial needs are being adequately met. They address housing, nutrition, transportation, and family caregiver support needs. They also arrange for counseling, bereavement support, burial/funeral planning, or referrals to other support systems.
The chaplain addresses the patient's and family's spiritual needs in both structured and unstructured religious formats.
Home health aides provide direct assistance with activities of daily living, food preparation, and shopping in the patient's home.
Bereavement counselors provide counseling to the patient and the patient's loved ones for up to 13 months after the patient's death.
Volunteers provide any extra support, such as companionship, visiting, and assisting with errands.
The World Health Organization defines palliative care appropriate for children as the active total care of the child's body, mind, and spirit. It also involves supporting the patient's family throughout the process. Healthcare providers offer palliative care services which begin when an illness is first diagnosed and continues, regardless of treatment choices, including choices directed at the disease. Note that palliative care for children, just like adults, requires a multidisciplinary approach that includes the family as an integral part of the team, even in limited resources. Also, palliative care services can be provided at home, community centers, and tertiary care facilities, just like in adults.
Palliative care is a challenging area of medicine for many reasons. Caring for patients near their end of life requires compassionate consideration of their medical and psychosocial health and understanding end-of-life care's legal and ethical implications. In the United States, legalities concerning end-of-life care vary by state, but there are some precedent national legal standards. When addressing legal issues in palliative care, it's important to understand some standard definitions and terms.
Advanced directives are legal documents that address patients' wishes regarding the management of their healthcare should the patient become incapacitated and unable to communicate. Examples of different types of advanced directives include: a healthcare proxy (or durable power of attorney for healthcare), living will, do not resuscitate orders, and do not intubate orders.
The health care proxy or durable power of attorney for healthcare (DPOA) document indicates a person has selected someone else to make medical decisions on their behalf, should they become unable to communicate. The DPOA creates clarity for the healthcare team regarding whom medical decisions should be referred when a patient becomes incapacitated. It should also be noted that the patient or the court can appoint a DPOA.
A living will is a legal document wherein a patient details what type of medical care/interventions are or are not desired should the patient be unable to communicate. Examples include withholding feeding tubes/artificial nutrition in the event of grave or terminal illness.
A do not resuscitate order indicates that a person has decided not to have cardiopulmonary resuscitation (CPR) attempts performed if they cease breathing or their heart ceases to function.
A do not intubate order is indicated when a person has decided not to have efforts towards mechanical ventilation performed if they cease breathing.
When a patient is approached with end-of-life issues, it's important to understand that a patient with decision-making capacity has the constitutional right to be free of bodily invasion and, as such, can refuse medical care, even if it results in their death. Regarding decision-making capacity, the complexity of this topic is out of the scope of this learning module. Still, it is typically determined by a physician that can assess a patient's understanding, expression of a choice and its consequences, and reasoning. Once a physician determines a patient is capable of sound understanding and reasoning, the patient is said to have decision-making capacity and can make their own healthcare decisions. If a patient cannot make their own healthcare decisions and has no advanced directives to guide treatment, a surrogate decision-maker must be utilized. A surrogate decision-maker that is not appointed within the advanced directives is typically selected from a family member, and in the following order of next of kin: Spouse, adult child or a majority of the adult children reasonably available, parents of the patient, siblings of the patient, and finally the nearest living relative. It should be noted that this order of next of kin varies by state, but in general, those mentioned above, the next of kin order is commonly used.
An important part of palliative care is making sure a patient and their family receive clear communication regarding their healthcare, as many end of life care treatment decisions are based upon the patient's understanding of their prognosis, treatment options, and the implications of their medical decisions. These communications are also essential to be well documented, particularly if a patient does not have an advanced directive in play. Documentation of communication within the medical record should include involved parties and their relationship to the patient, the patient's capacity, details of the discussion, and any medical decisions made. Documented communication and other clinical factors aid in determining the treatment course for a terminally or gravely ill patient should the patient become incapacitated.
A 35-year older woman (Alice) was admitted for an elective hysterectomy for large fibroids with associated menorrhagia. She has never been married and is currently in a relationship with her boyfriend of 4 years. He accompanies her today to the planned visit. She has a stepbrother (Mark) from whom she has been estranged for the past eight years. Her emergency contact listed in her chart is her boyfriend, Eddy. During her operation, she has an unexpected reaction to the anesthesia and ends up in a coma. After several weeks in the ICU, the medical team determines that her condition is unlikely to improve; therefore, the discussion to withdraw medical treatment is brought up. Alice failed to fill out an Advance Directives document. Her mother is alive but lives outside of the country (Ukraine) and communicating with her has been limited due to the time difference and limited resources. Her mother cannot fly to the United States to help make medical decisions on Alice's behalf. Alice's father is deceased. Who should be responsible for making decisions on Alice's behalf?
Legally, Alice's mother is the next of kin since she is unmarried and has no adult children. However, given that her mother is unavailable and difficult to reach, her stepbrother Mark is the next qualified member of her family to help guide her decision-making. Alice's boyfriend is not legally qualified to make decisions for her at this time. In some states, he may file a lawsuit requesting to be made the health care proxy since he most likely will know her most recent wishes regarding end-of-life decisions. Ideally, Alice's mother, her brother Mark and her boyfriend Eddy could all participate in a family conference with the medical staff to help guide decision-making based on Alice's wishes.
If a patient develops a rapid or sudden poor prognosis and is faced with the potential end of life medical-legal issues, determining the patient's functional capacity can help clarify if palliative care measures would be deemed in the patient's best interest. Functional capacity has become defined and quantified using established performance scales.
Performance status is a measure of a patient's functional capacity. Performance status has been found to predict survival, particularly in patients with cancer. Quantitative methods have been developed to stratify performance status, such as the Eastern Cooperative Oncology Group (ECOG) performance status scale and the Karnofsky Performance Status (KPS). As a healthcare team member, it is important to become familiar with these scales and their definitions since a physician might rely on a nurse or nurse aide's assessment to determine a patient's functional capacity (Goldman et al., 2020).
Reported as a value between 0-100 with incremental values of 10. Each level of functional capacity is defined below, along with the corresponding numerical value.
Value 80 - 100: Able to carry on normal activity and to work; no special care needed.
Value 50 – 70: Unable to work; able to live at home and care for most personal needs; various degrees of assistance needed.
Value: 40 – 0: Unable to care for self; requires the equivalent of institutional or hospital care; disease may be progressing rapidly.
As mentioned previously, palliative care addresses the "total pain" of patients, inclusive of their psychosocial and spiritual needs. There are common symptoms/diagnoses. However, that end-of-life patients face becomes a pivotal part of palliative care physicians' assessment and treatment plans. These common problem areas include pain management, pressure ulcers/wound care, fatigue, weaknesses, exhaustion, nausea/vomiting, mouth care, nutrition, anxiety/depression, and shortness of breath. In this course, we will review pain management, the management of dyspnea, and the nutritional challenges faced by palliative care and hospice patients.
Pain is the most prevalent symptom/diagnosis experienced by patients requiring palliative care, and it is crucial for the interdisciplinary palliative care team to intervene. The first step in treating pain is to assess the severity of the patient's pain. It is important to the patient-directed questions, such as pain location, onset, duration, severity, quality, and factors that relieve or provoke the pain and any associated symptoms. It is also important to determine the cause of the patient's pain. For example, a terminally ill patient with abdominal cancer-causing a bowel obstruction or abdominal pain caused by fecal impaction would likely have optimal symptom relief from decompression (nasogastric tube) or an enema than narcotics or other medications alone.
After assessing a patient's and addressing any causes of the pain, the next step is to determine which pharmacologic intervention is appropriate. Generally, three categories of medications are used to treat pain, opioids, nonopioids (including nonsteroidal anti-inflammatory drugs - NSAIDs), and additive or adjunctive analgesics. Opioids are utilized for moderate to severe pain severity and include morphine, oxycodone, fentanyl, hydromorphone, and methadone. Patients' response and tolerance to these medications greatly vary, so fluctuations in the types of opioids administered to chronically ill and suffering patients are not uncommon. Nonopioids generally include NSAIDs and are used to treat mild to moderate pain or act as an additive treatment to opioids. Examples of NSAIDs include acetaminophen, ibuprofen, naproxen, ketorolac, indomethacin, and aspirin. The nonopioid with perhaps the safest side effect profile is acetaminophen and is most commonly utilized. Adjunctive analgesics are not typically used as the primary medication to address pain but rather supplement opioids and nonopioids. Examples of adjunctive analgesics include gabapentin and pregabalin (for neuropathic pain) or dexamethasone (for general inflammatory conditions). The palliative care physician may proceed with palliative sedation for some patients with advanced illness and uncontrollable pain.
Shortness of breath, or dyspnea, is labored breathing experienced by the patient. In the terminally ill patient, it can be due to a myriad of causes ranging from lung cancer, pneumonia, pulmonary embolism, and anemia. Besides a patient reporting symptoms, dyspnea can also be detected with objective parameters such as respiratory rate, oxygen saturation, and arterial blood gas. However, it is important to note that these measurable values may not always correlate with what the patient reports to be their level of discomfort from their dyspnea. When a primary cause of dyspnea is found, treatment can be focused on appropriate intervention (such as anticoagulation for pulmonary embolism and antibiotics for pneumonia).
In many instances with terminally ill patients, it is more appropriate to correlate the patient's care goals with the management of their dyspnea. In those cases, the care goals may only be for symptom alleviation rather than a definitive cure. Modes of intervention other than supplementary oxygen could include breathing exercises, guided meditation/relaxation, activity level adjustments (i.e., encouraging wheelchair usage), or chest wall physiotherapy. Opioids can also be used to alleviate discomfort caused by dyspnea.
Many terminally ill patients suffer from cachexia and anorexia. Cachexia is a hypermetabolic state where there is accelerated loss of body mass and typically occurs in the setting of chronic inflammatory states such as cancers, HIV/AIDS, and chronic obstructive pulmonary disease. Anorexia is the loss of appetite for food. Anorexia is common in the terminally ill and can be caused by various factors such as medication side effects, psychosocial causes, mouth sores, constipation, nausea, or as a natural progression of a terminal disease process. Cachexia can occur in the absence of anorexia and vice versa. It is not uncommon to simultaneously encounter both diagnoses for the terminally ill patient. So it can become important to determine if there are any reversible causes of anorexia before treating a patient's cachexia. Treatments for cachexia typically increase the patient's appetite. Medications administered for appetite stimulation include glucocorticoids (steroids), megestrol acetate, cannabinoids, mirtazapine, and olanzapine.
There are some scenarios where it may provide a clear benefit to the patient, such as total parenteral nutrition (TPN) for patients with gastrointestinal cancers who can tolerate oral feeds or feeding tubes such as percutaneous endoscopic gastrostomy tubes (PEG tubes) for patients with dementia or neurodegenerative diseases which are too impaired to eat food orally. In addition to providing a mechanism of nutritional delivery, PEG tubes may also benefit the patient by providing access for medication administration and hydration.
An effective hospice or palliative care team depends on the effective collaborative efforts of the entire multidisciplinary team. Moving forward, some of the challenges that need to be addressed concerning hospice and palliative care services include early referral of patients, improving access to care for all patients, including minority patients, and continued education of all stakeholders including patients, family members, referring physicians, social workers, nurses, chaplains, and community volunteers.
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