End-of-Life Discussions: The Art of Delivering Bad News

THE CASE: An 84-year-old woman with progressive stenosis of the cervical spinal canal, type 2 diabetes mellitus, hyperlipidemia, gastroesophageal reflux disease, hypertension, and stable angina presents to her primary care physician after an appointment with the orthopedist who is monitoring her chronic degenerative joint disease. The orthopedist has determined that the patient's cervical spinal canal stenosis is inoperable and likely to progress.

Her medications include aspirin, hydrochlorothiazide, atenolol, pravastatin, famotidine, glipizide, metformin, acetaminophen and, occasionally, ibuprofen for pain. She is able to take all her medications by herself, and she can independently perform all activities of daily living except for personal care, for which she relies on help from a hired caregiver. She can walk only 20 feet with a walker and prefers using a wheelchair for longer distances.

Physical examination reveals unchanged symmetric decrease in strength of both lower and upper extremities. She is up-to-date on all preventive health measures.

On the day of her visit, the patient is in good spirits. She is accompanied by her daughter, who has become worried about her mother's decreasing ability to walk and overall frail health. The patient has lost 6 lb in the past 2 months, and her daughter notes that she does not eat as much as she used to (to which the patient responds by shrugging her shoulders and smiling). The daughter asks about her mother's prognosis in the face of her progressive disability and multiple comorbidities.

How are the concerns of elderly patients and their families about end-of-life issues best addressed?

Recent advances in health care technology have enabled older patients to overcome some of the more formidable challenges of aging and to live longer and healthier lives. Nonetheless, these advances have their limits. Patients and families frequently arrive at a decisional crisis when these limits are reached, when the benefits and burdens of aggressive medical interventions become difficult to balance. One means of regaining this balance is through an early discussion of the patient's end-of-life preferences. Such a discussion can help all involved frame decisions in the context of the patient's values and can enable the patient to make more informed choices, achieve better palliation of symptoms, and have a greater opportunity to work on bringing closure to his or her life's issues.¹

By the year 2030, persons between the ages of 66 and 84 years (the baby boomer generation) will make up 20% of the American population.² In the coming years, clinicians' ability to conduct end-of-life discussions with competence and compassion will become increasingly important. Here we offer approaches to the delivery of bad news, to discussion of treatment options and advance directives, and to broaching the subject of hospice.

WHEN TO INITIATE AN END-OF-LIFE DISCUSSION

An ideal time to initiate an end-of-life discussion is early in the course of a chronic illness. In many cases, however, such an opportunity may not arise or may be missed. End-of-life discussions are recommended in the following situations:

• Imminent death.
• Recurrent hospitalizations for severe progressive illness.
• Extreme suffering and poor prognosis.
• Discussion about prognosis of a life-limiting illness.
• Discussion of treatment options that are likely to be a significant burden to the patient.
• When a clinician answers no to the question: "Would you be surprised if in the next year you heard that the patient died?"³

WHO INITIATES END-OF-LIFE DISCUSSIONS?

A primary care practitioner who has a long-standing relationship with a patient is best suited to discuss end-of-life care with that patient and his family.⁴ Unfortunately, the fragmentation of care that is commonplace in today's health care system has resulted in the responsibility for end-of-life discussions frequently falling to other physicians who are less familiar with the patient. In 2001 more than 50% of deaths occurred in the hospital setting and 23% occurred in nursing homes.⁵ In settings such as a hospital or ICU, to which the primary care physician typically does not have access, the discussion is often handled by specialists. Although admission to a nursing home for short-term rehabilitation or long-term care may provide an ideal opportunity to initiate a discussion about advance directives, such a discussion is often handled by institutionally based physicians who may not have an established rapport with the patient and family.

WHOM TO INCLUDE IN THE DISCUSSION

An end-of-life discussion should always start with the patient, provided he demonstrates decision-making capacity. If the patient is not able to make decisions because of cognitive impairment or incapacitation, then conduct the discussion with the designated surrogate, usually a family member. Use the criterion of substituted judgment when discussing end-of-life issues with a surrogate, asking questions such as the following:

• "What would your loved one want if he were able to participate in this discussion?"
• "Have you ever discussed what he would want if this situation arose?"

Although end-of-life discussions begin with the patient, an early request by the physician to involve the patient's loved ones is essential. Such discussions usually take place in the context of a family meeting. Remember that it is up to the patient to define "family." In addition, encourage the involvement of the entire team of caregivers, including nurses, social workers, and clergy members-although not at the expense of overwhelming the family.

GENERAL GUIDELINES

Bear in mind that the various aspects of end-of-life discussions often overlap. For example, a discussion of goals might arise while you are breaking bad news, which could in turn lead to an exploration of the patient's preferences about cardio- pulmonary resuscitation (CPR).

Conversations about end-of-life issues can take place over time. Be aware that you may not come to any definitive conclusions during the first or even the second conversation. In a situation in which the conversation does not cover all necessary ground, make it clear that further discussions will follow and that concerns will continue to be addressed. This can be achieved by summarizing the conversation, with particular emphasis on the patient's expressed wishes, and then elucidating the specific points that need to be covered in a subsequent visit. Document in the chart what was talked about and decided and what remains to be discussed.

BREAKING BAD NEWS

Discussions in which the clinician must present a patient and his family with new information regarding a poor prognosis must be handled with special care and consideration for all involved. Before sharing difficult information, it is important first to ascertain what the patient and family already know (Table 1). Speak in terms that are readily understood. Encourage those present to express how they feel about what they have heard, and make sure to acknowledge their responses.

DISCUSSING TREATMENT PREFERENCES, GOALS, AND ADVANCE DIRECTIVES

A conversation about treatment preferences and goals can be started by ascertaining the patient's comprehension of his medical condition (Table 2). Prepare for the discussion by reviewing the patient's record, history of all illnesses, prognosis, and treatment options with attendant risks and benefits. No matter what treatment options are chosen, patients and families need assurance that the goal of comfort will always be paramount.

Conversations with patients and families about treatment preferences and clinical decision making can include discussion of advance directives. The AMA Code of Ethics recommends, in addition to the statutory document, completion of an advisory document that lists a patient's advance directives in detail.⁶ The advisory document can include the names of the patient's hospital and physician of choice, names of family contacts and their relative capacity with regard to the execution of health care decisions, and the patient's stated wishes about artificial nutrition and hydration and choices about life-sustaining treatment. In addition, this document must be portable: make certain that documentation of the patient's preferences travels with the patient to all sites of care.

Ideally, completing the advisory document provides an opportunity for the clinician to help the patient make informed decisions. In a Canadian study of 440 participants, 56% rated "Not to be kept alive in life support when there is little hope for a meaningful recovery" as being an extremely important element of end-of-life care.⁷ Moreover, the AMA states that "physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients."⁶

However, patients' understanding of when an intervention is likely to be of benefit may well be flawed. CPR serves as a good example of the gap between the lay public's understanding of the benefits of an intervention and its actual likely outcome. The public's assumptions about the benefits of CPR stem from its portrayal in the media, which often shows overly optimistic outcomes.⁸ Expectations of a 70% survival after attempted resuscitation from a cardiac arrest are not uncommon.⁹ In fact, in elderly patients with multiple medical problems who are resuscitated in the hospital, survival to hospital discharge is only 3.8%. Survival in older patients who sustain an out-of-hospital cardiac arrest is around 1%.⁴ Given the invasiveness of CPR and the unnecessary suffering caused by it, it is reasonable not to recommend this intervention in patients with expected poor outcomes.

DISCUSSING HOSPICE CARE

Initiating discussions about hospice early in the course of a terminal illness gives patients a choice and a sense of control, prevents late referrals, and facilitates open communication. However, introduce the subject of hospice only after the prognosis has been conveyed to the patient and the goals of care have been clarified. It is helpful to identify needs for care and to introduce hospice as a service that can fulfill those needs. Important aspects of hospice care to emphasize include:

• Symptom management.
• Twenty-four-hour case management.
• Multidisciplinary team care.
• Spiritual support and bereavement services.

When asked what they value most as part of end-of-life care, older patients with life-threatening illnesses have rated as very important that information about their disease be communicated to them honestly by their physician and that they have adequate time to prepare for life's end.⁷ Hospice care can give patients the opportunity to address spiritual and emotional needs while providing their loved ones with much needed support and assistance. Retrospective assessment of quality of care at the end of life reveals that families report more satisfaction with symptom relief, respect for the patient, and emotional support with home hospice care than they do with deaths that occur in a nursing home or a hospital.⁵

A discussion of hospice should explore the need and ability of families to accept responsibility for providing the bulk of care in the home. Hospice care is most effective when used for several months. However, it is also essential that patients and families understand that the decision to pursue hospice care is reversible; they can revoke the benefit and discontinue hospice at any time during their care. Although few families choose to revoke the decision, the knowledge that they can do so often reassures and empowers them.

FOLLOW-UP OF THE CASE

Questioning by the physician revealed that the patient understood that her spinal stenosis was progressive and that no curative treatment was available. However, she did not comprehend what the progression of her condition would entail. After the physician reviewed what the patient could expect (increasing weakness, a complete inability to walk, increased dependence on caregivers for personal care, and possibly breathing difficulties) and checked to make sure that both the patient and her daughter understood the explanation, he asked the patient what her goals were at this time. She replied that what she most wanted was to maintain her dignity and quality of life.

The physician then discussed advance directives: he explained the types of aggressive interventions that might be available and the likelihood of success for each, given the patient's condition. The patient stated that she did not want aggressive measures, including CPR.

The daughter had questions about the possible timeline for her mother's decline and need for nursing home care. The physician agreed to address these questions at a subsequent visit in a month's time. He also provided both women with reading material on living wills and durable power of attorney.

References:

REFERENCES:

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2.United States Census Bureau, 2004. US Interim Projections by Age, Sex, Race, and Hispanic Origin. Available at: http://www.census.gov/ipc/www/usinterimproj/. Accessed December 5, 2007.

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6.American Medical Association. Advance care directives. Available at: http://www.ama-assn.org/ama/pub/category/14894.html. Accessed November 8, 2007.

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11. Stanford Faculty Development Center. End- of-Life Care Curriculum for Medical Teachers. 2003. Available at: http://www.growthhouse.org/stanford/index.html. Accessed December 11, 2007.