Clients Need to “Lead the Doctor” on End-Stage Illness

Do your clients inform you when they have been diagnosed with an end-stage or terminal illness? Do you ask them to tell you? Even if you don’t, you might find this information useful for yourself and your loved ones.

Suppose your client learns that he/she has advanced cancer that isn’t curable. A recent study finds that your client will likely make different decisions about care if their doctor has talked with them sooner versus later about their treatment options for end-of-life care.
Specifically, the study finds that most patients make decisions for more “comfort care” and less aggressive care (like additional chemotherapy or ICU care) in their last month of life when they’ve talked with their doctor earlier, according to study author Dr. Jennifer Mack of the Dana-Farber Cancer Institute. Of course, some patients do choose more aggressive care regardless of the timing of this discussion. And that’s the point: earlier discussion can help patients get the kind of care that they actually want.

Why is it important to know this? Because oncologists are not good about initiating discussions about the patient’s wishes for care as they face the end of their life. In this study, doctors talked to patients about their wishes on average only 1 month before the patient died. Usually, this kind of conversation occurs only after all the chemotherapy options have been exhausted, according to Dr. Thomas Smith, director of palliative care for the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Why? It’s a “hard conversation” for doctors to have, Dr. Smith explains, but avoiding it “doesn’t serve as well to prepare the patients and families for what’s coming.”

Other studies have also found that near the end of life, less aggressive care can improve a patient’s quality of life, help patients stay at home, and can in some cases even help patients live longer. And — family members are actually less likely to develop depression after the patient’s death.

So the take-away is this: if a person is diagnosed with advanced cancer or other terminal illness, it’s up to the patient and the family – whether this person is your client, your loved one, or yourself – to initiate a discussion with the doctor about all treatment options. These options include comfort care and alternatives to all-out “aggressive” treatment. The patient and family can ask, for example: “what will my life be like if I do get the chemotherapy? What will my life be like if I don’t? How long might I live? What are my options for comfort care (including pain management and/or hospice)? What are my chances of staying at home?”  With this kind of information, patients and families can make treatment decisions that best matches their wishes.

Yes, it’s a travesty that many doctors don’t take the lead on this with their patients. But until medical training and medical culture change in this regard, we have to rely on ourselves and our families to do it. Don’t be bashful. Don’t feel that you’re challenging the doctor. In fact, many physicians will be relieved that you have raised it and were just waiting for a cue from you to talk about it.

Randi J. Siegel, MBA, is the President of DocuBank (docubank.com), the largest advance directives registry in the U.S., which ensures that the emergency information and healthcare directives of its 200,000 enrollees are immediately available 24/7/365. Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries. A member of the International Society of Advance Care Planning, she is active in health policy and health education related to advance care planning and advance directives and serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative. Randi is an ongoing contributor to the Academy blog.

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