THE DYING PATIENT
From the American Academy of Family Physicians’ 2006 Scientific Assembly, Washington, DC
| END-OF-LIFE CARE —Mary Elizabeth Roth, MD, Associate Chief Academic Officer, Geisinger Health System, Danville,
PA
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| Opening point: health care team obligated to provide care that relieves suffering arising from physical, emotional, social,
and spiritual sources
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| Goals of good end-of-life care: 1) provide adequate pain and symptom management; 2) avoid inappropriate prolongation
of dying; 3) help patient achieve sense of control; 4) relieve burden of illness; 5) help patient strengthen relationships
with loved ones
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| End-of-life support in intensive care unit (ICU): family-centered approach; focus not only on patient but also on
family and caregivers; keep families informed on what to expect, what is happening, and “who does what for whom” during
dying process; remarks—primary care physicians provide helpful interface with ICU team and should make bedside
visits to dying patient
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| Getting family involved: ask nurses to instruct family members on how to bathe, reposition, and provide comfort to
dying patients; have them ascertain if patient in pain; encourage family members to bring meaningful personal articles
(including photographs) into ICU and keep them at bedside
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| Most important needs of families of dying patients: 1) be with dying person (regardless of rules about visiting);
2) be helpful; 3) be informed of dying person’s changing condition; 4) understand what is being done and why; 5) be assured
of patient’s comfort; 6) be comforted themselves; 7) ventilate emotions; 8) be assured their decisions right; 9) find
meaning in dying of loved one; 10) be fed, hydrated, and rested
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| Greatest fears of dying patients: pain and shortness of breath; remarks—assure patients management of their pain
and distress highest priorities of caregivers; provide sedation as requested by patient; know priorities of patients and families
(patient’s priorities take precedence); encourage family members to carry pagers or cellular telephones when they
leave hospital room (“we will call you when something happens”); encourage family members to contact clergy
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| Simple amenities to provide in dying patient’s room: tissues; adequate number of chairs (including sleep
chairs); blankets; coffee; comfort food; enhance aesthetics of room; allow patient to listen to favorite music
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| Cultural issues: assure patients their cultural beliefs understood and that cultural expectations will be met (eg, handling
of body after death, including autopsy, organ donations; cultural norms of grieving; religious rites); comments—allow
patients opportunity to experience spiritual meaning and fulfillment as they take “last journey”; bedside religious services
and involvement of clergy encouraged; provide family members with meaningful rituals for coping with death, especially
if dying patient is child
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| During withdrawal of life support: remove all distractions, so family’s attention can be devoted entirely to patient;
turn off monitors and remove leads and cables (in most cases); remove unnecessary catheters and tubes (may be disruptive;
if autopsy probable or necessary, consult medical examiner before removal); if foul play or medical malpractice involved,
be careful about “touching anything”; if significant reason exists for involving medical examiner, call examiner
before clearing scene of death
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| Special points: holistic approach essential to end-of-life care, even in ICU; after death, pay attention to details;
specifics—do anything possible that returns somewhat normal appearance to dead patient; remove crash carts, floor
debris, blood-stained sheets and instruments; dress open or visible wounds, slashes, and gunshot wounds; replace religious
medals and icons removed earlier from patient
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 | Other points: restraints can be removed when obvious patient not “coming back”; strive to make family members
“whole” as they say good-bye; after death, allow them to stay in room as long as possible
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| Transition from curative to palliative care: often occurs in piecemeal fashion; sometimes patient receives inconsistent
treatment regimen (ie, some elements aimed at palliation, others at cure); when considering palliation in acute care
setting, consider rewriting orders to make sure they make sense for direction and plan; discontinue unnecessary tests; always
write orders to deal with pain and respiratory distress; consider use of vasopressor or inotropic agent to maintain patient
comfort
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| Dying process: strive to make it as gentle as possible; patients typically want to die in sleep; they do not want to die
while being flooded with lights, probed by needles, or punched in chest; hypercarbia and hypoxia may be “gentle way
to go into the dark night”; even in ICU, consider ventilator withdrawal
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| Terminal wean and terminal extubation: terminal wean—main advantage that patients do not develop upper airway obstruction
during withdrawal of ventilation; if done slowly with analgesia and sedatives, patients do not develop air hunger
or anxiety; terminal extubation—main advantages are 1) it does not prolong dying process, and 2) it allows
patient to be free from endotracheal tube; make sure family members know what process entails
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| End-of-life considerations in heart failure (HF) patients: mortality for class IV HF significant (5-yr survival
≈25%); educate patient and family members that survival directly related to patient’s functional capacity (reason for
referral to hospice and palliative services); encourage formulation of advance directives; start talking about end-of-life
issues if HF patient not responding to ≥2 medications; ensure continuity of medical care between inpatient and outpatient
settings; emphasize to family members that hospice and palliation involve “great care,” not “no care”
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| Observations: communicate realistic expectations about survival as patients approach class IV HF and as they approach
their final days; aggressive procedures during final days of life inappropriate (gives false hope); all available technology
may not be enough to resuscitate class 4 HF patient
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| Case of 51-yr-old man: has congestive HF, still smoking, and just sustained another myocardial infarction (MI); had
crushing chest pain and pulmonary edema in emergency department (ED) and unresponsive to medications; rejected
heart transplantation and elected instead for hospice; died within 6 wk of ED visit
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| Patient with class IV HF: 1-yr survival 50% and 5-yr survival ≈25%; be honest and seek consent for whatever is done, including
holistic choices and spiritual support; spiritual support—defined as making patient find “balance and connection with
a greater power”; family physicians should provide spiritual support, as it helps restore sense of hope and meaning
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| Treatment decisions: should be based on goals of care, assessment of risks and benefits, clinical evidence, and patient
and family preferences; clearly document preferences and evolving care plan on chart
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| Palliation: base care plan on identified values and goals of patient and family, along with professional guidance; care
team must navigate needs to ensure continuation of insurance coverage; involve patient and family in proposed changes
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| Family physician’s role in transition from acute care: consider desires of patient and family; connect with case
management and insurer; consult with palliative care or hospice teams; never dump ICU patient into “dark back corridor”;
walk “final journey” with your patient
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| HOSPICE AND PREDICTORS OF POOR PROGNOSIS AND MORTALITY —John W. Finn, MD, Chief Medical Director,
Hospice of Michigan, Detroit
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| Physician-assisted suicide (PAS): <0.1 % of hospice patients (in speaker’s experience) seek PAS; PAS problem of
“worried well and chronically ill”; investigate mental health issues and social fabric in patients seeking PAS
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| Terminally-ill patients: highly vulnerable; often seek hospice because they want set of services and do not want to go
into nursing home; require best of medical knowledge and ethics, symptom management, and family involvement
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| Prognostication: involves formulating bedside prognosis and communicating information to patient and family; physician
should know whether patient’s condition curable, chronic (and requires rehabilitation), or terminal; contingency
plans needed for terminal patients
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| Traditional duties of physicians: diagnose, treat, and prognosticate (often ignored); prognosis is context in which medical
decisions made; important to know likely outcome
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| Survival curves: based on population studies; not helpful in predicting outcome of individual patient; final common denominators
of prognosis are functional status and patient burdens (eg, severity of illness; presence of comorbid conditions
and symptoms interfering with quality of life)
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| Terminal illness: in United States, legally defined as life expectancy <6 mo (intent to limit hospice care); comments—
speaker disagrees with this definition; many chronically ill patients who need hospice or safety net of vital services do not
have access to them; access to hospice in America based on clinical judgment and assessment; in Great Britain, hospice
available to people with incurable progressive diseases associated with limited life expectancy; some people never appropriate
for hospice because they live entire life fighting disease
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| Death: 10% of people experience sudden death; most people accumulate list of diagnoses that eventually makes them debilitated,
dependent on others, and symptomatic (these symptoms interfere with quality of life, particularly those associated with
cancer)
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| Cancer: “snowball scenario” of debilitation; decline accelerates as patient approaches death and starts accumulating complications;
comment—most cancer patients die from complications (eg, sepsis, pathologic fractures, hypercalcemia), rather
than cancer itself; rapid acceleration of problems develops near end of life
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| Organ failure: eg, heart failure, chronic obstructive pulmonary disease; functional status compromised at onset and progressively
declines as patient’s overall health deteriorates; people with organ failure typically discharged at lower functional
level every time they leave hospital; patients on downward slope have terminal illness; patients usually die during
exacerbations
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| Frailty: typically occurs in elderly people with disabilities and multiple illnesses; frail people extremely vulnerable to specific
illnesses and their consequences
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| Working with terminal patients: tell them the truth and do not promise or resort to unnecessary measures
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| When to consider hospice or palliative care: when patient no longer candidate for rehabilitation; terminal prognosis
correlates best with function and characterized by progressive dependency and escalating symptoms; current national
guidelines for hospice care—ineffective for predicting mortality; have never been validated; are static indicators, ie, do
not give sense of where patient is on trajectory; poor substitutes for comprehensive clinical assessment; restrict many eligible
patients
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| Major factors influencing terminal prognosis: specific illness and its severity; comorbid conditions; symptoms;
quality of life
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| Other factors: tempo—how fast disease progressing (eg, indolent, galloping, explosive); small cell carcinoma of lung
and Burkitt’s lymphoma have doubling times measured in 1 to 2 wk; agendas—most decisions made around patients,
not by patients; power of will—word “hospice” might be enough for some people to let go and no longer fight; physicians
must be careful about their words and attitudes, as they might affect patient’s mind, spirit, and prognosis; factors
that lower prognosis—nonadherence; depression; suicidal ideation; ongoing substance abuse; homelessness; family
conflicts; financial distress; caregiver factors—patients receiving loving care at home live longer than those in nursing
homes; intuition—learning to trust “gut feelings”; if one gets sense patient will not do well, honor that; mystery—
involves sense of spirit; some patients can predict exact date when they will die
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| 4-yr mortality prognostic index: from Veterans Affairs study involving 20,000 older adults (≥50 yr of age); most powerful
predictors of 4-yr mortality included advanced age (best predictor), male sex, disease state (eg, diabetes, cancer), current
smoking, body-mass index (BMI) <25 (among seniors mild obesity may be better than being lean); bathing; managing
money; walking several blocks, pushing living room chair across floor
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| Prognosticating in cancer: patients with category 1 or treatable cancer—should be evaluated by psychiatrist if
they refuse treatment or elect homeopathic treatment; patients with category 5 cancer, (eg, pancreatic cancer, metastatic
cancer of kidney, or metastatic malignant melanoma)—require hospice or referral to phase 1 studies; treating
terminal cancer does not work, it only creates false hope; patients with category 2 cancer—generally provide
first-line treatments, but second- and third-line treatments may be needed; if cancer not treatable, can usually still get
response and remission with some prolongation of life; patients with categories 3 and 4 cancer—hospice or palliative
care referral may be indicated if other comorbid conditions present
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| Points: functional status most powerful predictor of cancer prognosis; if performance status ≤50%, prognosis not good; if
patient leaves house only to see physician or go to church, median survival 2 to 3 mo; symptoms in cancer patients that
portend poor prognosis include dysphagia (part of anorexia/cachexia syndrome), weight loss, and dry mouth; dire complications
include sepsis and hypercalcemia
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| Breast cancer: most important prognostic factors are disease-free intervals and number of metastatic sites; if woman redevelops
breast cancer <1 yr after therapy, median survival 11 mo for 1 metastatic site, 5 mo for 4 metastatic sites; if
woman has 10- to 20- yr disease-free interval, median survival 40 mo for 1 metastatic site vs 21 mo for 4 metastatic sites;
point—recurrent breast cancer incurable
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Educational Objectives
| The goal of this program is to educate the listener about providing good care for the dying patient. After hearing and
assimilating this program, the clinician will be better able to:
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| 1. Attend to the most important needs of dying patients and their families, including cultural issues.
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| 2. Understand the greatest fears of terminally ill patients.
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| 3. Refer patients for palliative care or hospice.
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| 4. Care for patients with class IV heart failure and various stages and forms of cancer.
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| 5. Recognize factors that influence the prognosis of critically ill patients.
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Suggested Reading
Bercovitch M, Adunsky A: High dose controlled-release oxycodone in hospice care. J Pain Palliat Care Pharmacother
20:33, 2006; Boockvar KS, Meier DE: Palliative care for frail older adults: “these are things I can’t do
anymore that I wish I could ” JAMA 296:2245, 2006; Booij LH: End-of-life decisions during intensive care treatment.
Curr Opin Anaesthesiol 16:221, 2003; Chapple A et al: What people close to death say about euthanasia and
assisted suicide: a qualitative study. J Med Ethics 32:706, 2006; Curtis JR, Engelberg RA: Measuring success of
interventions to improve quality of end-of-life care in the intensive care unit. Crit Care Med 34(11 Suppl):S341,
2006; Finn JW: A few words. J Palliat Med 4:379, 2001; Finn JW: Determining prognoses for patients with terminal
illnesses. Am Fam Physician 73:2062, 2006; Finn JW: Discussing terminal illness with a patient. Am Fam
Physician 74:175, 2006; Giordano J: Hospice, palliative care, and pain medicine: meeting the obligations of non-
abandonment and preserving the personal dignity of terminally ill patients. Del Med J 78:419, 2006; Grant RE,
Boylan KL: Just end-of-life policies and patient dignity. Am J Bioeth 6:32, 2006; Hauptman PJ et al: Chronic
inotropic therapy in end-stage heart failure. Am Heart J 152:1096, 2006; Lee SJ et al: Development and validation
of a prognostic index for 4-year mortality in older adults. JAMA 295:801, 2006; Lutz ST: Hospice through the eyes
of a radiation oncologist. J Pain Symptom Manage 32:295, 2006; Marco CA, Schears RM: Death, dying, and last
wishes. Emerg Med Clin North Am 24:969, 2006; Marik PE: Management of patients with metastatic malignancy
in the intensive care unit. Am J Hosp Palliat Care 23:479, 2007; Nohria A et al: Medical management of advanced
heart failure. JAMA 287:628, 2002; Philip JA, Komesaroff P: Ideas and compromises in palliative care. J Palliat
Med 9:1339, 2006; Plu I et al: Ethical issues arising from the requirement to provide written information in palliative
care. Palliat Med 21:55, 2007; Ray A et al: Peaceful awareness in patients with advanced cancer. J. Palliat
Med 9:1359, 2006; White HK, Cohen HJ: The older cancer patient. Med Clin North Am 90:967, 2006; Willard
C, Luker K: Challenges to end-of-life care in the acute hospital setting. Palliat Med 20:611, 2006; Zapka JG et
al: Care at the end of life: focus on communication and race. J Aging Health 128:791, 2006; Zuckerman C: Looking
beyond the law to improve end-of-life care. Generations 23:30, 1999.
Faculty Disclosure
In adherence to ACCME guidelines, the Audio-Digest Foundation requests all lecturers to disclose any significant financial
relationship with the manufacturer or provider of any commercial product or service discussed. For this issue,
the faculty reported nothing to disclose.
Drs. Roth and Finn were recorded on September 27, 2006, at the Annual Scientific Assembly of the American Academy
of Family Physicians, held in Washington, DC. The Audio-Digest Foundation thanks the speakers and the Academy
for their cooperation in the production of this program.
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