Imagine if you were living through one of these medical dilemmas…
Your husband had a massive stroke and is now in the ICU on a ventilator. He is not expected to recover. Doctors recommend turning off his ventilator. You never talked about his specific wishes for end-of-life care, but you feel sure he wouldn’t want his life artificially extended when there’s little chance of meaningful recovery. You agree with the doctors, but your three adult children say, “No!” What should you do?
Your wife’s been devastated by metastatic cancer and chemotherapy. There’s an experimental drug that might extend her life a few months, but it could have severe side effects and be very painful. In her late 60s, your wife prides herself on being a fighter…but is more suffering really worth it? What should the two of you do?
These are the types of medical dilemmas that can be planned for in an advance directive—a legally enforceable document that guides family members or health-care proxies in decision-making when loved ones are unable to decide for themselves. (There are two kinds of advance directives—a living will or health-care power-of-attorney.)
Troubling statistics: Only 23% of Americans have put their end-of-life choices into writing.
Yet in the absence of a detailed advance directive, you’re not alone when you have to make a life-and-death decision for a loved one. Few people realize that hospital ethics committees exist for these sorts of difficult questions. Ethics committees are usually comprised of health-care professionals including doctors from different specialties, nurses, social workers, clergy members, ethicists, lawyers and others.
Nearly all US hospitals have these committees. In fact, all US hospitals accredited by The Joint Commission —that’s almost all hospitals—are required to have a way to address ethical issues related to a medical crisis.
You Are Not Alone!
During a loved one’s health crisis, it’s common to feel frightened, conflicted and alone in the difficult decisions before you. What you need to know…
• The hospital ethics committee is there to help you. The committee is not the ethics police—it has no oversight or enforcement role. Nor are its members wise sages who always know what to do…and they are not empowered to make medical decisions on a patient’s behalf.
Rather, the committee’s purpose is to help patients, families or surrogates and health professionals identify value conflicts or uncertainties…and resolve the conflict or confusion, often by building consensus around the values and rights of the patient—putting the patient first.
To initiate a consultation with the ethics committee, approach your doctor, nurse, social worker or hospital clergy, and tell him/her that you want an ethics consultation. Most ethics consult services respond promptly to the request. Some ethics consults can take multiple meetings, while others are resolved within a short time. It depends on the nature of the issue underlying the consult request.
When a request is made, consultants will often get a description of the issue, review the patient’s chart for relevant information, interview members of the care team as well as family members and the patient himself if appropriate. Depending on the issue, the ethics consultants or team also may ask to have a meeting with members of the care team and family to clarify the patient’s diagnosis, prognosis, range of medically acceptable options as well as the patient’s wishes and values.
• It’s always appropriate to ask for help. Maybe you want help but don’t think that your issue is an “ethical” dilemma. For example, you might just want a clarification regarding the differences between a living will and a health-care power-of-attorney or perhaps you (or a family member) are uncertain about your role in decision-making and feel overburdened.
Ask for help anyway! You don’t need perfect clarity to request a consultation with the hospital ethics committee.
How to Get the Most Help
To maximize the value you’ll get from an ethics consultation, you should…
• Identify the reason for your consult. Why do you want the consult? What is bothering you? What are your concerns? Be as clear as possible about the reason for your request. This will help the committee help you.
• Understand your actual role. The most common ethical dilemma is end-of-life medical care. This may involve a patient who is too incapacitated to make a decision. In these cases, a spouse, adult child or surrogate is asking for help in deciding whether or not to withhold life-sustaining treatment, such as a ventilator or feeding tube.
This is a burden no one can or should bear alone—thinking it is your responsibility to decide whether your loved one lives or dies. That is not the actual role of the spouse, family member or surrogate at the end of life.
Your role, which you clarify with the help of the ethics committee, is to explore, articulate and advocate for what the patient cares about and values. Even if you never had a specific discussion about, say, long-term ventilator support, your knowledge of your loved one’s life, personality and values can help the care team make decisions that respect and honor your loved one.
In the end, most decisions should be focused on the best fit between your loved one’s values and the range of medically appropriate treatment options—and you are there to simply discern and implement the wishes of the one you love, in the last hours or days of that person’s life.