Advance Directives and Living Wills: Bringing Up Sensitive Topics
Karen’s 85-year old mother needs more and more help. Her mother has lived independently in her own home since Karen’s father passed away nearly a decade ago. A recent diagnosis of heart disease has both women worried about future medical problems, the impact being sick has on independence, and ultimately having to discuss end-of-life issues. Both Karen and her mom know that they need to have a plan in place, but neither one knows how to broach the subject without upsetting the other. The end of life is a frightening topic for both family caregivers and their loved ones. No one particularly wants to think or talk about death or significant illness—however, not having a plan in place can also cause problems when health issues do arise.
What To Talk About?
With so many different terms like “living will” and “medical directive” used by professionals, it can be confusing to determine what’s most important for your individual situation. There are several documents that people should consider with their loved ones:
- Advance Health Care Directive (AHCD): Through this document, people can establish specific written instructions for health care decisions in the event that they are incapacitated and cannot make health care decisions for themselves. This document can also be used to appoint a health care agent who can make health care decision if a person is incapacitated. This is also known as a “Durable Power of Attorney for Health Care.” Generally speaking, the Durable Power of Attorney would only begin making health care decisions if the person is incapacitated and unable to make decisions.
- Living Trusts: A Living Trust gives individuals the ability to transfer control of their assets in case they become incapacitated. Assets, such as a home and finances, can then be managed by the “trustee” to ensure that assets are properly managed according to the wishes outlined in the trust.
An attorney should help you complete trust, power-of-attorney, and other estate-related documents.
How to Start Talking
While some people may be open to discussing their preferences for end-of-life care, this is not always the case. For example, siblings and other relatives may be reluctant due to a fear that planning for end-of-life will hasten its arrival or cause your loved one to think you expect them to die soon. Family caregivers are faced with the challenge of keeping their own emotions and opinions in check while being open to hearing the preferences and feelings of their loved ones. Below are a few suggestions to get the ball rolling.
- Schedule a time to talk
Let your loved one know that you’d like to schedule a time to discuss their health care preferences so that when the time comes, you can convey their wishes should they be unable to do so themselves. If appropriate, your loved one may want to involve siblings and other relatives or close friends involved with care. As a family caregiver, it’s helpful to include everyone in this discussion who may be involved in helping you to make health care decisions for your loved one.
- Be prepared
These conversations can be awkward and difficult at times, but the end goal is to ensure that your loved one’s health care wishes will be followed if they’re unable to make their own decisions. Another important outcome of these conversations is that family members and friends are not left trying to guess a loved one’s health care preferences in the event they are making decisions for them. By discussing their preferences and putting them in writing, people can alleviate some of the difficult, emotional questions that arise when a loved one is dying. We discussed this in greater detail in our blog posting for National Health Care Decision’s Day (“The Biggest Gift You Can Give Your Family?”).
Much of the conversation may revolve around listening to the wishes of your elderly loved one, or concerns of their own. Taking notes and asking questions can help prompt more discussion.
- Consider how to surface unstated concerns
Be sensitive to worries about the possibility of pain or disability. Are there fears related to loss of dignity while undergoing treatment or a decline in mental capacity? Might there be a worry about not being able to convey their concerns or control their environment? Do they have strong feelings about lingering in a state of unconsciousness or on breathing apparatus? Can they bear to discuss leaving loved ones, unfinished projects, work, or loved ones without adequate financial resources? Where do they want to die?
- Offer some input
Depending on the situation, you may be able to offer a story about another person’s recent death or illness that relates and informs the discussion. Talking about a friend or relative’s experience may help to identify peoples’ preferences for their own advanced health care decisions.
- Don’t criticize
It is possible that some preferences expressed regarding types of medical and comfort interventions will surprise you or differ from what you might chose for yourself. For example, your family member may not want “extraordinary measures” such as a feeding tube or ventilator used to keep them alive.
- Take the time you need to have a good discussion
Give yourself and your loved one the gift of enough time to discuss their preferences fully. If the discussion becomes too uncomfortable for either of you, suggest taking a break in the conversation so that each person has a little breathing room to think through their decision carefully. These are big decisions, so don’t feel obligated to make all of them in one sitting.
FCA offers additional helpful resources, such as the following fact sheets:
- Advanced Illness: CPR and DNR
- Advanced Illness: Feeding Tubes and Ventilators
- Advanced Illness: Holding On and Letting Go
- Advance Health Care Directives and POLST
- Legal Planning for Incapacity