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The purpose of this course is to enable the participant to get an in-depth understanding of palliative care and hospice practices. Learners will be able to understand the differences and similarities between palliative care and hospice. They will also get an overview of the legal principles surrounding the clinical practice palliative care and hospice medicine. Additionally, learners will understand the role of each member of the palliative care and hospice team.
After completing this course, the learner will be able to meet the following objectives:
Palliative Care focuses on improving the quality of life of patients who are gravely ill. It not only aims to improve the lives of the patients who are ill but it also focuses on improving the lives of the caretakers and family members who are impacted by the patient’s illness. The palliative care team has several goals which are to adequately identify patients who are in need of palliative care services, perform an appropriate assessment of the patients identified and finally, treating the identified problems of the patient, especially the treatment of pain. In addition to focusing on physical needs, palliative care focuses on addressing the patient’s spiritual and psychosocial needs as well.1
As it stands, palliative care is only offered to patients who are in the very late stage of serious illness. It can and should be offered in tandem with curative therapies from the time the patient is first diagnosed. It is important to apply palliative care interventions early on because some patients may suffer not only from the consequences of the illness but also from the consequences of the treatment interventions. As a matter of fact, Temel et al. were able to show that concurrent application of both curative and palliative treatment may prolong the patient’s lifespan.2
Most dying patients express that they want to die at home with some level of comfort and dignity. In addition, they express that they would like to: have a sense of control over their end of life decisions; find meaning and purpose in life as they near the end of their lives; avoid unnecessary prolongation of the dying process; have freedom from pain and other distressing symptoms such as dyspnea as they approach the end; and finally, they would like to have an opportunity to say goodbye to friends and families before they die.
Hospice is essentially a philosophy and practice of healthcare that focuses on symptom management, optimization of quality of life for patients and loved ones, and a supported transition towards the end of a patient’s life.3 The goals of hospice care are to provide an improved quality of life rather than prolong life or cure an illness.
The hospice philosophy understands that a dying patient not only suffers from their terminal illness, but also from 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.”4 As such, the hospice practice is one involving an interdisciplinary team that aims to address the patient physical, psychological, spiritual, and social needs.
Hospice care is most often provided in the patient’s home, but can also be provided in dedicated facility. According to the National Hospice and Palliative Care Organization (NHPCO) 2015 Facts and Figures on hospice, hospice patients received care in the following distribution: private home (35.7%), nursing home (14.5%), residential living facility (8.7%), hospice inpatient facilities (32%), and acute care hospitals (9.3%).5
Palliative medicine provides a framework for pain and symptom management in all patients who are seriously ill, and it can be seamlessly merged with curative therapies such as organ transplantation. Hospice, on the other hand, shares the same philosophy with palliative care to alleviate suffering in the life of a seriously ill patient. It also places the utmost importance on patient-centered care and encourages shared decision making to provide care to patients that are in keeping with the patient’s 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; this is largely defined by the Medicare Hospice Benefit. Consequently, hospice services have very strict admission criteria: a physician would certify that the patient has six months or less to live if the disease follows the natural course. Additionally, in hospice, unlike palliative care, the treatment goal is directed more towards comfort rather than cure. 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. In the event that 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 mostly provided in a patient’s home in the United States. Occasionally, it is provided in residential facilities or within long-term facilities. Palliative care, on the other hand, is a medical subspecialty, and 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.
The palliative care and hospice teams are made up of a multidisciplinary group which 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 the primary care team. In essence, the main focus of the palliative care team is to relieve and prevent suffering in order to optimize the quality of life for both patients and their families. The multidisciplinary team has this goal as a target irrespective of the patient’s overall prognosis be it days, weeks, months or years.
The Hospice/Palliative Care physician has medical and administrative roles. In an ideal setting, the hospice physician is board-certified in Hospice and Palliative Medicine. Many hospice physicians provide care in the patient’s home and 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 as well as 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 and coordinates the interdisciplinary team in addition to also providing 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 opt to use Licensed Vocational Nurses (LVN) to provide intermediate level nursing care for patients under the delegation of a registered Nurse.
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, and/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 to 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 history of palliative care systems stems from the care of patients with advanced cancer. In the United Kingdom, the first sophisticated hospice facility was opened in 1967 and was called St. Christopher’s Hospice. St. Christopher’s Hospice focused on research and patient care and 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.6 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.
Palliative care services started in most of the Western European countries in the 1980s with subsequent rapid growth of palliative services, research, and facilities since then. For example, the European Association of Palliative Care performs and supports research to produce innovative reports, and in 2003 the Council of Europe published palliative care guidelines which described palliative care as an essential and basic right of patients. Eastern European countries have had slower expansion, but steady improvements in availability have been seen in countries such as Romania and Poland.7
According to the Latin American Association of Palliative Care (ALCP) Atlas of Palliative Care in Latin America, there were less than 1000 palliative care services in a region of 19 analyzed Latin American countries, and a majority of services were provided in the home care setting. Argentina and Chile provide almost half of the total number of services in Latin America. However, the best coverage was reported to be in Costa Rica.8
In Asia, the first hospice service was established in the 1960’s in Korea, In the 1970’s hospice services were established in Japan, and subsequently in the 1980’s in India. However, the expansion and development of palliative care and hospice services in India have been less progressive than other Asian countries.9
In Africa, the first hospice was opened in 1993 in Uganda in 1993, however overall development of palliative services in the continent has been rather slow. Other African countries with palliative care models are available in South Africa, Kenya, Zimbabwe, and Uganda.9
Palliative care primarily focuses on non-contagious causes of death, as noncontagious diseases represent a significant majority of worldwide deaths according to the World Health Organization.10 Most adult patients needing palliative care suffer from progressive, non-cancerous diseases, followed by patients that suffer from cancerous diseases. However, an exception is made for Africa, where the vast majority of patients needing palliative care suffer terminal illness related to HIV/AIDS.9
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.
Studies have been performed to evaluate the international availability of palliative care. One study found that 58% of the 230 countries evaluated had one or more palliative care systems available.11 Other studies indicate that specialty-level palliative care was only available in 30-45% of countries.9, 12 It was also noted in another study that up to 83% of the world’s population live in countries with limited or no access to opioid medications that are critical in addressing end of life pain relief.13
The WHO has identified the most common illnesses that require palliative care for adults and children:10
Adults:
Alzheimer and miscellaneous dementias, cancer, cardiovascular diseases, liver cirrhosis, chronic obstructive pulmonary diseases (COPD), diabetes, HIV/AIDS, kidney failure, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, and drug-resistant tuberculosis (TB).
Children:
Cancer, cardiovascular diseases, liver cirrhosis, congenital anomalies (excluding heart abnormalities), blood and immune disorders, HIV/AIDS, meningitis, kidney diseases, neurological disorders, and neonatal conditions.
The WHO also identified that the ratio of palliative care services to population ranges from 1:1000 (in Niue, a South Pacific Ocean island country) to 1:90 million (in Pakistan). An international trend is that access to medical care, including palliative care, varies by the socioeconomic status of individual countries. Access varies by whether a country is considered to be a high or low income country. As expected, greater access is seen in higher income countries.10
The stratification of a country’s income is the WHO utilizes is based upon the World Bank and their usage of the World Bank Atlas method to determine high, middle, or low income country status. Examples of high income countries include the United States, European countries, and other Asian countries, such as South Korea. Low income countries include developing countries, such as some African nations, and India.10
Palliative care is a challenging area of medicine for many reasons. Caring for patients near their end of life requires compassionate consideration of the patient’s medical and psychosocial health, as well as understanding the legal and ethical implications of end of life care. 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 the wishes a patient has in regards to 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. A DPOA creates clarity for the healthcare team in regards to whom medical decisions should be referred when a patient becomes incapacitated. It should also be noted that a DPOA can be either appointed by the patient or by the court.
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 is an order indicating 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 in the event 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. In regards to decision making capacity, the complexity of this topic is out of the scope of this learning module, but 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. In the event that a patient cannot make their own healthcare decisions, and there are no advanced directives to guide treatment, then 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. A surrogate is selected 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, the above mentioned next of kin order is commonly used.
An important part of palliative care is making sure a patient and their family receive clear communication in regards to their healthcare, as many end of life care treatment decisions are based on the patient’s understanding of their prognosis, treatment options, and what are the implications of their medical decisions. It is also essential that these communications are well documented, particularly in the event of a patient not having advanced directives 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 that were made. Documented communication along with other clinical factors aid in determining the treatment course for a terminally or gravely ill patient should the patient become incapacitated.
A 35-year old 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 the course of 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 as well as limited resources. Her mother is unable to 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 decision making. Alice’s boyfriend is not legally qualified to make decisions for her at this time. In some states, he may be able to 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 stepbrother 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 potential end of life medical-legal issues, determining the patient’s functional capacity can help clarify if palliative care measures would be deemed to be in 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.14 Performance status has been found to predict survival, particularly in patients with cancer. Quantitative methods have been developed to stratify performance statuses, such as the Eastern Cooperative Oncology Group (ECOG) performance status scale and the Karnofsky Performance Status (KPS). As a member of the healthcare team, it is important to become familiar with these scales and their definitions, as a physician might rely on a nurse or nurse aide’s assessment to determine a patient’s functional capacity.
ECOG performance status scale14:
Status 0: Fully active; no performance restrictions.
Status 1: Strenuous physical activity restricted; fully ambulatory and able to carry out light work.
Status 2: Capable of all self-care but unable to carry out any work activities. Up and about >50 percent of waking hours.
Status 3: Capable of only limited self-care; confined to bed or chair >50 percent of waking hours.
Status 4: Completely disabled; cannot carry out any self-care; totally confined to bed or chair.
Karnofsky Performance Status Scale14:
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
100: Normal, no complaints, no evidence of disease
90: Able to carry on normal activity, minor signs or symptoms of disease
80: Normal activity with effort, some signs or symptoms of disease
Value 50 – 70: Unable to work; able to live at home and care for most personal needs; various degrees of assistance needed
70: Cares for self, unable to carry on normal activity or to do active work
60: Requires occasional assistance but is able to care for most needs
50: Requires considerable assistance and frequent medical care
Value: 40 – 0: Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly.
40: Disabled, requires special care and assistance.
30: Severely disabled, hospitalization is indicated although death is not imminent.
20: Hospitalization is necessary, very sick, active supportive treatment necessary.
10: Moribund, fatal processes progressing rapidly.
0: Dead
As mentioned previously, palliative care address the “total pain” of the patient which is inclusive of their psychosocial and spiritual needs. There are common symptoms/diagnoses. However, that end of life patients face and that become a pivotal part of palliative care physician’s 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 as well as 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 a crucial area 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’s important to the patient directed questions, such as pain location, onset, duration, severity, quality, and factors that relieve or provoke the pain as well as any associated symptoms. It is also important to determine the cause of the patient’s pain, for example, a patient terminally ill with abdominal cancer that is 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.
In assessing a patient’s pain, the patient may not be able to communicate clearly the severity. In these situations, other pain scales can be utilized. Examples include the Pain Assessment in Advanced Dementia (PAINAID), Behavioral Pain Scale, and the Critical Care Pain Observation Tool (CPOT).15, 16, 17 The PAINAID scale uses parameters such as vocalization, facial expressions, body language, and consolability to assess pain. The Behavioral Pain Scale uses parameters such as facial expressions, upper limb movements, and compliance with mechanical ventilation, while the CPOT uses similar parameters in addition to muscle tension, and vocalization when applicable.15, 16, 17
After assessing a patient’s and addressing any causes of the pain, the next step is to determine which pharmacologic intervention is appropriate. Generally, there are three categories of medications used to treat pain, and these are opioids, nonopioids (including nonsteroidal anti-inflammatory drugs - NSAIDS), and additive or adjunctive analgesics. Opioids are utilized for moderate to severe pain severity and can include medications such as morphine, oxycodone, fentanyl, hydromorphone, and methadone. Patient’s response and tolerance to these medications greatly vary, so fluctuations in types of opioid administered to chronically ill and suffering patient are not uncommon. Nonopioids generally include NSAIDs and are used to treat mild to moderate pain, or to act as an additive treatment to opioids. Examples of NSAIDs include acetaminophen, ibuprofen, naproxen, ketorolac, indomethacin, and aspirin. The NSAID 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 are used in supplementation with opioids and nonopioids. Examples of adjunctive analgesics include gabapentin and pregabalin (for neuropathic pain), and dexamethasone (for general inflammatory conditions). For some patients with advanced illness and uncontrollable pain the decision to proceed with palliative sedation may be made by the palliative care physician.
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. Other than a patient reporting symptoms, dyspnea can also be detected with objective parameters such as respiratory rate, oxygen saturation, and arterial blood gas. It is important to note, however, 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 goals of care with the management of their dyspnea, and in those cases, the goals of care 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 an array of 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, and so it can become important to determine if there are any reversible causes of anorexia prior to 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.
Other treatment considerations for cachexia might include artificial nutrition and hydration. However, no evidence has been found to suggest that artificial nutrition prolongs or improves quality of life and it is not considered to be a standard of care for terminally ill patients.18 There are some scenarios where it may provide 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 who 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.
In light of great variations in clinical practice around the country among different palliative care groups and variations in clinical practice by clinicians in the same clinical practice, there is a need for actionable guidelines to help direct clinical practice in palliative care and hospice medicine. As a matter of fact, several organizations have put forth guidelines for this very purpose. These organizations include; the Institute for Clinical Systems Improvement (ICSI) and the National Cancer Care Network (NCCN).
The aims of the ICSI guidelines were; to increase the early identification of patients who could benefit from palliative care services, improve the referring physician’s comfort with discussing palliative care services with the patients and their families, increase the percent of patients with a chronic illness who have an identified and documented plan of care in the early stages of the disease, improve on reassessing and adjusting the patient’s plan of care as their conditions change, and lastly to increase the completion and documentation of advanced directives for patients with a serious illness.19
The ICSI recommends that organizations should first assess their systems and processes put in place to aid implement palliative care services prior to engaging in any implementation of recommendation. Secondly, any implementation plans must include a strategy to adequately train and educate the staff. They recognize that organizations may need to undergo a culture shift in order to implement the necessary recommendations adequately.19
The ICSI put forth certain key strategies for the successful implementation of these guidelines which include19;
- Providing education to clinicians, patients and families regarding the elements and appropriateness of palliative care and hospice services
- Clearly define and address the differences between palliative care and hospice services.
- Develop and implement an effect system which easily allows clinicians to identify and assess patients in need of palliative care services. They recommend that this system should include a screening tool.
- Create scripts for referring clinicians to use to assist them in initiating the discussion for a palliative care services referral.
- Establish a process for the timely evaluation of patients referred to palliative care services.
