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As a physician, you strive to provide your patients with the best medical care possible – to manage their chronic diseases, to send their cancer into remission, to rehabilitate them after a stroke. But when is it too much? Do you know when your patients want treatment and when they would rather be made comfortable to let their illness take its course? How do you know the right time to initiate these end-of-life discussions?
"As people's capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives – resisting the urge to fiddle and fix and control," noted surgeon and author Atul Gawande in his latest book, "Being Mortal."
The best way to curb this instinct is to have advance care planning conversations as an early part of treatment planning for people with advanced or chronic diseases – even when the end of life isn't imminent. Advance care planning requires more than having patients sign advance directives; it involves talking about what truly makes life worth living.
Trends in End-of-Life Care
The number of people dying in inpatient care has declined, but 25 percent of Medicare payments still go toward care in the last year of life, according to Health Services Research. Much of these payments are for repeat hospitalizations, suggesting an increase in care intensity.
The Institute of Medicine (IOM), professional societies, and advocacy groups are beginning to focus more on advance care planning. A recent IOM report stated that people who talk about their care preferences usually choose treatments that improve quality of life. However, most people have not had these conversations, and too few have advance directives. The report recommends that end-of-life care should be person-centered, family-oriented, and evidence-based.
Information to Share in an Advance Care Planning Discussion
An advance care discussion isn't a conversation about dying, but rather about how individuals would like to live out their remaining days – whether that means months or years.
"Physicians have strong relationships of trust with their patients," said Rev. Tom Harshman, director of spiritual care and mission integration at Sequoia Hospital. "By initiating the discussion, you're giving patients permission to think about the goals of care with all options open. For chronic or advanced disease, the earlier the conversation is held, the more time there is for reflection on personal values and hopes."
To truly provide patient- and family-centered care, these conversations should happen early in the treatment process so your patient's values can drive the care plan. Patients may feel uncomfortable confronting their mortality. However, when the discussion is framed around hope and looking toward the future, you are able to actively involve patients and their families in developing treatment plans for the entire disease or aging process.
What Do Patients Need?
Harshman said patients look for some key information from advance care planning conversations: their prognosis and course of illness, how their wishes will be followed, their treatment options and the costs/benefits of each, and reassurance that they will be seen as a person throughout treatment.
Studies have found factors that are important to most patients near the end of life: Pain and symptom management. A sense of control. Relieving the burden for themselves and their families. Strengthening relationships with loved ones.
Understanding these priorities and how your patients rank them will help you evaluate various treatment options. Given that comfort is a top concern, it seems natural to include palliative care in any conversation, but that may take some explanation.
A study by The New England Journal of Medicine found that 70 percent of patients are "not at all knowledgeable about palliative care." However, once these patients understood that its purpose is to alleviate pain and suffering in conjunction with curative treatment, the majority said they would be likely to consider it.
Harshman recommends talking about palliative care along with the patient's personal goals when a chronic condition or advanced illness could lead to death within 3-5 years. The Journal of Clinical Oncology also recommends incorporating palliative care into standard oncology treatment.
How to Have an Advance Care Planning Discussion
Too often, advance care planning comes up when a patient is nearing the end of life and all curative treatment options have failed. This can feel like a conversation of lost hope. "There's never a time when there's nothing to do," Harshman said. "There may be a time, though, when there's nothing curative to do."
He recommends beginning this kind of conversation by asking, "If cure isn't an option, what would your hopes or wishes be for the rest of your lifetime? What is most important to you?" Help your patients understand that there are ways to make them comfortable. Focus on their hopes of what they'll be able to do in their final days, particularly if they choose to forgo costly treatments that are unlikely to provide any benefit.
To effectively lead the conversation but give the patient room for contemplation at the same time, try these tactics:
- Take into account cultural differences related to talking about death.
- Be clear and informative by using concepts and words the patient and family can understand.
- Frequently double-check for understanding.
- Be realistic about their condition. One BMJ study found that 63 percent of physicians of terminally ill patients were overly optimistic about the patient's survival, while only 17 percent underestimated survival.
- Be kind, and share a personal connection. Show the person you value them as an individual. Listen more than talk.
- Remember that advance care planning is exactly that: planning and preparation. The earlier you talk about the patient's goals for living the fullest life right now, the more prepared you will both be at the end of life.