Jonathan Byrd and Maria C. Dans
GENERAL PRINCIPLES
Over the course of the past century, how and where Americans die has changed greatly. Advancements in public health have led to increased life expectancy; some diseases, once rapidly fatal, have now become chronic illnesses. Although our ability to treat many diseases has improved, this evolution has created a new set of problems for patients, their families, and health care providers. The process of dying has lengthened, and in many cases, it has moved from homes to health care facilities. The palliative care and hospice movements arose in attempt to address these new challenges and to use the advancements of modern medicine to relieve suffering and to enhance quality of life.
Definition
· The World Health Organization defines palliative care as “the active total care of patients… Control of pain, of other symptoms, and of psychological, social, and spiritual problems…[in order to provide]…the best quality of life for patients and their families.”1
· The National Consensus Project for Quality Palliative Care has broadened the definition:
o The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.
o Palliative care is both a philosophy of care and an organized, highly structured system for delivering care.
o Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth.2
· Hospice is a specific type of palliative care designed for terminally ill patients who have a life expectancy of <6 months. Hospice agencies provide team-based services to patient, family, and caregivers in the home or an institution.
Epidemiology
· Over the past century, the most common causes of death in the United States have undergone a shift toward chronicity (e.g., congestive heart disease vs. acute myocardial infarction and chronic obstructive pulmonary disease vs. pneumonia).3,4
· As the technologic aspects of medicine have advanced, dying has been viewed more as a failure of therapy and less as a natural part of human existence. Diagnosis and cure may be considered more important targets of therapy than the relief of symptomatic distress and suffering.
· More people are very debilitated during the time before their death; increasingly, the care they need is provided not at home, but in institutions (Table 36-1).5
· Hospice use has been increasing: in 2010, 41.9% of Americans died while receiving hospice care compared to 11% in 1995. Hospice care, however, is still invoked late in the course of terminal illness—median length of hospice treatment was 20 days in 2010, with approximately 35.3% of people dying within 7 days of initiation of hospice care.6
· There has been a dramatic increase in medical care cost, especially at the end of life.
o The cost of care provided during the last 6 months of life continues to be estimated at 10% of the total cost of health care.7
o Much of this care is subsidized by the federal government. Medicare and Medicaid were not designed for care of the dying but provide approximately 50% of the funding.8
o The rest of the financial burden falls mainly upon patients and their families, with up to 30% of families impoverished by a family member’s death.9
· The modern hospice movement, and, subsequently, the specialty of palliative care developed as an attempt to improve care for dying patients and their families.
o Saint Christopher’s Hospice opened in London, UK, in 1967, and the first inpatient hospices were introduced in North America in the 1970s.
o The Omnibus Budget Act of 1983 created the Medicare Hospice Benefit. It changed the delivery of hospice care in the United States by emphasizing care at home rather than at inpatient facilities.
o The subspecialty of palliative care grew out of the modern hospice movement in the 1980s to address the needs of people with serious illness who might still be pursuing curative treatment. In 2006, the American Board of Medical Specialties approved the creation of Hospice and Palliative Medicine as an official subspecialty of 10 participating specialty boards (Anesthesiology, Emergency Medicine, Family Medicine, Internal Medicine, Pediatrics, Physical Medicine and Rehabilitation, Psychiatry and Neurology, Radiology, Surgery, and Obstetrics and Gynecology). Also in 2006, the Accreditation Council for Graduate Medical Education (ACGME) began the process of establishing standards for the creation of ACGME-accredited fellowships in Hospice and Palliative Medicine.
TABLE 36-1 Percentage of Deaths by Location in the United Statesa
aBased on 1992 U.S. Vital Statistic Data published by the Institute of Medicine in 1997.
Data from Committee on Care at the End of Life, Institute of Medicine; Field MJ, et al., eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press; 1997.
DIAGNOSIS
Palliative care and hospice services involve a multidisciplinary approach to address patient suffering.
Indications for Palliative and Hospice Care
While palliative care consults may be considered at any point during the course of a person’s disease, national guidelines have been established to assist providers with determining when to consider hospicefor specific life-limiting noncancer conditions.10 These are detailed in Table 36-2.
TABLE 36-2 Possible Indications for Hospice Care
NYHA, New York Heart Association. Data from Medical guidelines for determining prognosis in selected non-cancer diseases. Hosp J 1996;11:47–63.
Appropriate Timing
· Appropriate timing for palliative care and hospice interventions is presented in Figure 36-1.
· Palliative care does not exclude the continuation of life-prolonging treatment but rather complements curative therapy by helping clarify goals of care and improving symptomatic control.
· Based on Medicare guidelines, hospice eligibility requires a terminal diagnosis and a life expectancy of <6 months. Patients who live beyond 6 months must be reevaluated by their hospice agency, but may continue in hospice care as long as the conditions of their initial enrollment remain true.
Figure 36-1 Palliative and hospice care in the course of illness. (Adapted from National Consensus Guidelines for Quality Palliative Care, 2002 and Stanford University Faculty Development Center End-of-Life Curriculum.)
Venues for Palliative and Hospice Interventions
· Palliative care and hospice care may be provided in either inpatient or outpatient settings.
· In the outpatient setting, palliative care may be performed:
o By the primary care provider or treating specialists
o In a palliative care subspecialty clinic by a board-certified palliative care provider and a multidisciplinary group that may involve social workers, chaplains, nurses, and therapists
· Outpatient hospice care can be arranged by a physician by contacting a local hospice organization that serves the patient’s residential area. Admission to hospice does not require a do not resuscitate order and can be concurrent to other therapies.
Goal of Palliative Care
The goal of palliative care is to use the strengths of a multidisciplinary team to improve quality of life for both patient and family in the remaining time a patient has. Specific aims include the following:
· Clarifying patient, family, and care team goals, preferences, and choices
· Providing holistic care of patient and family
· Providing aggressive control of bothersome symptoms
TREATMENT
The principles of palliative care can assist in the following:
· Addressing bothersome symptoms such as pain, nausea, and dyspnea
· Sharing bad news
· Clarifying patient, family, and healthcare provider goals
· Identifying additional stakeholders
· Facilitating discussions to align the goals of care with the treatment plan
Assessing the Experience of the Suffering Patient
· Traditional medical practice views symptoms and signs as evidence of disease. This evidence should disappear once the appropriate diagnosis is made and therapeutic measures initiated.
· The palliative care approach complements traditional models by emphasizing that symptoms themselves are appropriate targets for therapy. It uses the clues that the disease process provides to understand and treat the symptoms.
· Symptoms have both physical and psychological components.
o Physical aspects may be local (what is causing pain) or central (how pain is processed) components.
o Psychological components include affective (how an illness is emotionally experienced), cognitive (what patients understand about their illness), and spiritual (how symptoms are organized by patients into a framework that allows them to understand their illness).
Steps to Sharing Bad News
· Many physicians have minimal formal training in sharing bad news during their preclinical years and few watch more experienced physicians model such conversations during their clinical rotations.11
· Discussions of bad news frequently involve raw emotion. They are difficult even under the best of circumstances and can be both personally and professionally challenging. Done skillfully, however, they can help patients, families, and health care providers move through difficult situations in a productive manner.
· Traditionally, effective communication has been viewed as something that physicians-in-training absorb through experience as a function of natural aptitude and not as a set of teachable skills. More recently, authors have emphasized that, regardless of affinity, there are several key steps to facilitating conversations about bad news.12
o Preparation is extremely important and includes the following:
§ Understanding the medical condition and implications of available therapies and preparing resources if barriers exist.
§ Arranging an in-person meeting (if possible) to share the news, along with having a support person available.
§ Finding a quiet place and adequate time to sit and talk with minimal distractions. Turning pagers/cell phones to vibrate and instructing support staff not to interrupt, or when possible, including support staff who have a relationship with the patient may be helpful.
o Next, making a connection with the person hearing the news is important. This begins with introductions of all parties involved, followed by an assessment of their immediate needs, comfort, and their understanding of the situation.
o Sharing the news involves speaking slowly using clear and unambiguous language, prefacing the news with a statement, such as “I unfortunately have some bad news,” and giving the news briefly.
o After delivering the news, assessment of the reaction is key. A direct question about what the patient or family is thinking may prompt useful dialogue. Respond with brief, simple answers, and recognize that the emotional impact of the bad news may restrict the quantity of information that can be delivered. Follow-up is essential. If the recipient of the bad news is alone, ask whether someone should be called to provide additional support.
o Finally, transition to follow-up by establishing a concrete plan for a future meeting to address additional questions. If a referral is necessary, identify whom that provider will be and how he or she will be contacted. Close the meeting with a statement of concern and commitment to help.
· It may be helpful after difficult discussions to debrief with other members of the health care team—pay attention to your feelings and needs as the provider who shares the bad news.
Goals of Care Discussions
Once the initial shock of bad news has subsided, it is important to establish clear goals for care in order to develop a rational therapeutic plan. One algorithm for addressing goals of care discussions is the GOOD acronym, developed as part of the Stanford End of Life Curriculum.13
Goals
· Before the discussion begins, it is essential to identify the stakeholders and assess their understanding of the current situation. The patient and his/her family are obvious stakeholders, but there are frequently many other people as well, including health care providers or members of the community.
· “Big picture goals” about the “who, what, when, and where” of living should be identified first because they provide the context. In addition, most “big picture” goals reveal underlying values that must be understood before moving onto specific aims.
Options
· Next, specific options are discussed by listing them and then narrowing them down by the requests of the involved stakeholders.
· Providers have an important role in discussing the benefits and burdens of the options available.
· Providers can help stakeholders understand the possible outcomes associated with available options.
· Values of the stakeholders are important because they help assign the relative importance of each outcome state.
Opinions
· Offer your opinion in a neutral manner, incorporating earlier data elucidated about patient and family views, clinician goals, benefits and burdens of care, probabilities of outcomes, and the values of the stakeholders involved.
· Many patients are interested to know what their caregivers’ opinions are and, in fact, appreciate information provided along with a recommendation.
Document
· Finally, write a note that includes key information from the meeting including the names and relationships of the participants, decisions regarding the “big picture goals,” the immediate care plan, and the care plan in the event of discussed scenarios.
· It is also helpful to include an assessment of the decision-making process, and whether it makes sense in light of the “big-picture goals.”
Addressing End-of-Life Nutrition and Artificial Nutritional Support
· Many clinicians recommend for or against artificial nutrition on the basis of cultural or personal biases (e.g., fear of starving the patient) rather than medical evidence. A review of the published literature indicates the following:
o Artificial nutrition can improve survival in acute catabolic states such as sepsis or in highly functional patients with advanced proximal gastrointestinal cancer, and in those with amyotrophic lateral sclerosis who desire nutrition.14
o Tube feeding does not reduce the risk of aspiration pneumonia.15,16
o Tube feeding does not prolong life in those with advanced cancer or dementia.17
o Tube feeding may not improve quality of life and can decrease quality of life by depriving a patient of the pleasure of eating.18
o Parenteral feeding carries risk of fluid overload, line infection, electrolyte imbalances, and hyperglycemia.
o Most actively dying patients do not complain of hunger or thirst, though dry mouth is prevalent.19
o Reduced appetite and weight loss are common in chronic disease.
· Knowing these facts and addressing a patient’s nutritional preferences prior to the occurrence of cachexia or anorexia can reduce patient and family emotional stress and foster acceptance of the dying patient’s altered eating habits.20
· It is important to differentiate between the provision of artificial nutrition and the acts of eating or feeding. Most people enjoy eating (even if only a few bites of their favorite food) and feeding a loved one who is sick can be a significant and pleasant nurturing activity for both patient and family.
· Appetite stimulants may be considered if prognosis is unclear and death not imminent.
o Megestrol 400 to 800 mg/day, medroxyprogesterone 500 mg bid, or dexamethasone 2 to 4 mg bid have shown similar nonfluid weight gains but have no effect on mortality and equivocal effects on quality of life.21
o Mirtazapine should be considered for concurrent cachexia and depression (common in end of life care) with one study showing an average weight gain of 3.9% body weight after 3 months of 30 mg/day; mirtazapine is not recommended in the absence of depression.22,23
· It is important to validate family members’ concerns, especially in terms of their intent as those who love and care for the patient.
· Acknowledging the difficulty of the situation and the commitment of all concerned to the patient’s well-being may help families make informed decisions regarding end of life nutritional preferences.
Assessing and Managing Nonpain Symptoms
Nausea and Vomiting
· Nausea and vomiting arise from the emetic center in the medulla, which receives input from, and is triggered by multiple sources including the following:
o Gastrointestinal tract (e.g., dysmotility, obstruction, or compression)
o Infection or inflammation (especially involving the gastrointestinal tract)
o Effects of medications that are sensed as toxins in the chemoreceptor trigger zone
o Vestibular instability
o Cognitive and affective components (e.g., environmental clues, underlying depression, or anxiety) that impact the cerebral cortex
· Understanding the origin of nausea can help to guide more specific and effective therapies based on relative receptor activity and drug targets (Table 36-3).24
· Though the mechanism is unclear, corticosteroids have good antiemetic properties. Steroids, marijuana/dronabinol, and the antidepressant mirtazapine through 5-HT3 and 5-HT2 blockade are used primarily in cancer and chemotherapy-related nausea (see Chapter 35).25
· If nausea or vomiting persists, an agent from a different class should be used rather than one with a similar mechanism of action to minimize side effects.
TABLE 36-3 Antiemetics for Specific Causes
Modified from Hallenbeck J, Weissman D. Fast fact and concept #5: treatment of nausea and vomiting Center to Advance Palliative Care.www.capc.org. Last Accessed 1/12/15.
Dyspnea
· Dyspnea is the experience of shortness of breath. It is caused most commonly by a cardiac or pulmonary process, but it is also associated with debilitation, wasting syndrome, and progressive neurodegenerative diseases and can have a large affective component of panic and fear.
· Reversible causes including symptomatic pleural effusions, pneumonia, severe anemia, and ascites should be addressed with the patient’s larger goals of care in mind.
· Oxygen saturation, heart rate, arterial blood gases, and even respiratory rate can correlate poorly with the presence and severity of dyspnea.
· Opioids are the best-studied medicines and current gold standard in the treatment of dyspnea with low-dose morphine (cumulative dose 10 to 30 mg/day) typically used.26
· Several studies have shown that opioid use for dyspnea when not increased too rapidly does not lead to respiratory depression, increased CO2 retention, or early death.27
· Benzodiazepines are generally not helpful in relieving dyspnea, but may be used if there is a significant anxiety component related to the dyspnea.28
· Oxygen can also reduce dyspnea in those who are hypoxic but is no better than room air in patients without hypoxia.29
· Beneficial nonpharmacologic interventions including breathing training, gait aids, neuroelectrical muscle stimulation, and chest wall vibration were effective for relieving breathlessness while fan use, supportive music therapy, relaxation counseling, or psychotherapy were equivocal.30
Delirium
· Delirium involves acutely changing or fluctuating mental status. It is extremely common in terminally ill patients and is associated with agitated or hypoactive states.
· In elderly patients and patients with advanced cancer, delirium is associated with worse survival and increased morbidity; it should be treated aggressively to ensure patient comfort and safety.31,32
· Reversible causes should be identified and addressed promptly, including drug side effects, undertreated pain, urinary or bowel obstruction, and sensory deprivation (missing hearing aid, glasses, etc.).32
· Clinical guidelines suggest the following role of pharmacotherapy:
o The initial focus should be to reduce/discontinue any drug or intervention that is contributing to delirium especially benzodiazepines, anticholinergics, and corticosteroids.
o Secondary strategies include improving sleep hygiene through behavioral modifications (e.g., temporal clues such as turning TVs and lights off), reorientation, and if needed low-dose sedating antipsychotics at bedtime (haloperidol typically 0.5 to 1 mg PO, IM, or IV, chlorpromazine 10 to 25 mg PO or subcutaneously or olanzapine 5 mg PO).33
REFERRAL
Referral may be considered to other subspecialties, such as pain management (for invasive palliative anesthesia such as nerve or spinal blocks), radiation oncology (for palliative radiation therapy to improve pain), chaplaincy (for spiritual or existential distress), or psychiatry (for more complicated anxiety, depression, or associated psychosis).
MONITORING/FOLLOW-UP
A palliative care approach involves a multidisciplinary effort to support patients and families in clarifying and achieving their goals. This may involve frequent follow-up with various members of the team, including: nurses to facilitate patient care and coach families in new ways to nurture; physicians to develop and coordinate a medical plan for symptom control; social workers to provide grief counseling and address complex psychosocial issues; and chaplains to address spiritual aspects of end-of-life care.
ADDITIONAL RESOURCES
1. Growth House, run by the Inter-Institutional Collaborating Network on End-of-Life Care. http://www.growthhouse.org (last accessed 1/12/15).
2. Center to Advance Palliative Care. http://www.capc.org/ (last accessed 1/12/15).
3. The American Academy of Hospice and Palliative Medicine. http://www.aahpm.org (last accessed 1/12/15).
4. The National Hospice and Palliative Care Organization, including a search link for hospice and palliative care providers. http://www.nhpco.org (last accessed 1/12/15).
REFERENCES
1.Doyle DG, Hanks GWG, MacDonald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed. Oxford, UK: Oxford University Press; 1998.
2.National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 2nd ed. http://www.nationalconsensusproject.org. Last accessed 1/12/15.
3.Brim OG Jr, Friedman HE, Levine S, et al., eds. The Dying Patient. New York: Russell Sage Foundation; 1970.
4.Anderson RN. Deaths: leading causes for 1999. Natl Vital Stat Rep 2001;49:1–87.
5.Committee on Care at the End of Life, Institute of Medicine; Field MJ, et al., eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press; 1997.
6.NHPCO. Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization; 2012.
7.Cohen SB, Carlson BL, Potter DEB. Health care expenditures in the last six months of life. Health Policy Rev (Am Stat Assoc Sect Health Policy) 1995;1:1–13.
8.Gornick M, Warren JL, Eggers PW, et al. Thirty years of Medicare: impact on the covered population. Health Care Finan Rev 1996;18:179–237.
9.Covinsky KE, Landefeld CS, Teno J, et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? Arch Intern Med 1996;156:1737–1741.
10.Medical guidelines for determining prognosis in selected non-cancer diseases. Hosp J 1996;11:47–63.
11.American Association of Medical Colleges. The Increasing Need for End of Life and Palliative Care Education. Contemporary Issues in Medical Education. Washington, DC: American Association of Medical Colleges; 1999.
12.Buckman R. How to Break Bad News. Baltimore, MD: Johns Hopkins University Press; 1992.
13.Hallenback J. Palliative Care Perspectives. Oxford, UK: Oxford University Press; 1993.
14.Gibson S, Wenig BL. Percutaneous endoscopic gastrostomy in the management of head and neck carcinoma. Laryngoscope 1992;102:977–980.
15.Nakajoh K, Nakagawa T, Sekizawa K, et al. Relation between incidence of pneumonia and protective reflexes in post-stroke patients with oral or tube feeding. J Int Med 2000;247:39–42.
16.Croghan J, Burke EM, Caplan S, et al. Pilot study of 12-month outcomes of nursing home patients with aspiration on videofluoroscopy. Dysphagia 1994;9:141–146.
17.Meier DE, Ahronheim JC, Morris J, et al. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med 2001;161:594–599.
18.Callahan CM, Haag KM, Weinberger M, et al. Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting. J Am Geriatr Soc 2000;48:1048–1054.
19.Conill C, Verger E, Henríquez I, et al. Symptom prevalence in the last week of life. J Pain Symptom Manage 1997;14:328–331.
20.McMahon MM, Hurley DL, Kamath PS, et al. Medical and ethical aspects of long-term enteral tube feeding. Mayo Clin Proc 2005;80:1461–1476.
21.Lopinzi CL, Kugler JW, Sloan JA, et al. Randomized comparison of megesterol acetate versus dexamethasone versus fluoxymesterone for the treatment of cancer anorexia/cachexia. J Clin Oncol1999;17:3299–3306.
22.Segers K, Surquin M. Can mirtazapine counteract the weight loss associated with Alzheimer’s disease? A retrospective open label study. Alzheimer Dis Assoc Disord 2014;28:291-3.
23.Fox CB, Treadway AK, Blaszczyk AT, et al. Megestrol acetate and mirtazapine for the treatment of unplanned weight loss in the elderly. Pharmacotherapy 2009;29:383–397.
24.Hallenbeck J, Weissman D. Fast fact and concept #5: treatment of nausea and vomiting Center to Advance Palliative Care. www.capc.org. Last Accessed 1/12/15.
25.Wood GJ, Shega JW, Lynch B, et al. Management of intractable nausea and vomiting in patients at the end of life. JAMA 2007;298:1196–1207.
26.Abernathy AP, Currow DC, Frith PA, et al. Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnea. BMJ 2003;327:523–528.
27.Jennings AL, Davies AN, Higgins JP, et al. Opioids for the palliation of breathlessness in terminal illness. Cochrane Database Syst Rev 2012;(7):CD002066.
28.Simon ST, Higginson IJ, Booth S, et al. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev 2010;(1):CD007354.
29.Abernathy AP, McDonald CF, Frith PA, et al. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnea: a double-blind, randomized controlled trial. Lancet2010;376:784–793.
30.Bausewein C, Booth S, Gysels M, et al. Non-pharmocological interventions for breathlessness in advanced stages of malignant and nonmalignant diseases. Cochrane Database Syst Rev 2008;(2):CD005623.
31.Witlox J, Eurelings LS, de Jonghe JF, et al. Delirium in elderly patients and the risk of postdischarge mortality, institutionalization, and dementia: a meta-analysis. JAMA 2010;304:443–451.
32.Lawlor PG, Gagnon B, Manicini IL, et al. Occurrence, causes, outcomes of delirium in patients with advanced cancer: a prospective study. Arch Intern Med 2000;160:786–794.
33.National Comprehensive Cancer Network. Palliative Care: Delirium. NCCN Clinical practice guidelines in oncology. Version 2.2 013. http://www.nccn.org. Last accessed 1/12/15.