Please Don’t “Do Everything” When I am in the Hospital
Every day in every hospital nationwide individuals very like you and me are admitted with serious illness. Those who have experienced this – or cared for someone who has – know that the very real medical decisions faced can be heart-rending. And few of us want to think ahead about these decisions.
April 16 is National Healthcare Decisions Day 1, a day dedicated to encouraging all of us to consider planning ahead about our healthcare choices. “Advance care planning,” as it is often termed, does not just mean completing an “advance directive” document, though you may wish to do so. Advance care planning really asks each of us to think deeply about our values and beliefs and to consider what healthcare choices will best reflect who we are and those values we hold most closely.
It also requires careful reflection on what specific medical choices we might face, and this is particularly difficult. As a medical ethicist who works with patients, families and healthcare professionals as they struggle with difficult decisions, often about medical care near the end of life, I have learned that we can rarely predict the exact medical decisions we will face. But what we are capable of is actively partnering with our physicians and other health care professionals to talk about our underlying goals (for treatment and for life), learn about the range of choices we may face, and accept that there are limits to what medicine can actually do.
We do not want to talk about critical illness or to contemplate those places of finitude from which we may not return. And yet, what we may gain – and give to our loved ones – by courageously thinking about and talking about these difficult realities is compelling.
This is hard work, for it does not entail simply saying yes to every potential intervention. “Do everything” is not a meaningful request or response in shared decision making. There are times when trying a treatment is quite reasonable, even when we are unclear about the outcome. And there are times when it is reasonable, perhaps deeply “right”, that one’s life goals will be better served by not trying the next research protocol or invasive intervention but focusing instead on the quality of the life one has yet to live.
In one 2010 study of patients with lung cancer, patients who received palliative care – care whose purpose is to keep patients comfortable, focus on quality of life and address patients’ needs as “whole persons” rather than just as physical bodies – experienced less pain, better function in everyday life, and lived on average almost 3 months longer than those receiving curative therapy only.2 We need to think carefully about what we really want and be empowered to work with our health care team to make well-informed decisions.
Our loved ones also benefit from such thoughtful choices. One recent study indicates that 60 % of respondents say that making sure their family is not burdened by tough decisions is “extremely important.” Yet 56% have not communicated their end-of-life wishes. 3 When a family member or other “surrogate” decision maker is asked to make decisions, their accuracy in predicting treatment choices of the patient is highly variable (50-74%) 4 We can do better in clarifying our values and choices and empowering and supporting our family members in understanding the choices we make.
Surveys indicate that 20 to 30% of Americans have advance directives, legally accepted documents in which one can indicate preferences about treatment and/or the name of the person you wish to make decisions for you if you cannot make decisions for yourself. 5 Advance Directives can be helpful records of our preferences; just as important, however, is the conversation behind these documents.
In the days following National Healthcare Decisions Day:
· Have the conversation with your family and other loved ones
· Consider creating an advance directive – contact your local bioethics center, hospital association or hospital
· Talk to your physician or other health care provider; keep talking with them
Resources: The Conversation Project; POLST (physician orders for life-sustaining treatment), Choosing Wisely, Values History Form
1. National Healthcare Decisions Day. http://www.nhdd.org/
2. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-742
3. Survey of Californians by the California HealthCare Foundation (2012). http://coalitionccc.org/documents/FinalChapterDeathDying.pdf
4. Susan Mockus Parks, Laraine Winter, Abbie J. Santana, Barbara Parker, James J. Diamond, Molly Rose, Ronald E. Myers. Family Factors in End-of-Life Decision-Making: Family Conflict and Proxy Relationship. J Palliat Med. 2011 February; 14(2): 179–184
5. Associated Press 2010
Health Care Ethics Consortium of Georgia. Georgia Advance Directive for Health Care
Georgia Health Decisions’ Critical Conditions
Kathy Kinlaw is Associate Director of the Emory University Center for Ethics and Director of the Center's Program in Health Sciences and Ethics. She is an Assistant Professor of Pediatrics, Emory School of Medicine; and Director of the Health Care Ethics Consortium of Georgia. Kathy is deeply committed to shared, informed involvement of patients and families in healthcare decision making.