Imagine your elderly parent has been hospitalized and cannot speak for themselves. The nurse calls you with questions; a lot of questions. Many you’ll be able to answer; date of birth, past medical history, medications they take. Some may be harder to answer than others; presence of advanced directives, “Do Not Resuscitate” orders, their wishes for end of life care. Conversations regarding how we wish to be cared for at the end of our life are hard. Having the discussion with your parents even harder. However, this discussion should be held so their wishes can be honored. In fact, the conversation regarding end of life decisions should occur well before the nurse calls to ask you because your parent can’t answer themselves. There are five wishes we need to know.
Ultimately, the conversation is about more than whether or not our parents want heroic, life prolonging measures when the time comes. Advanced directives (living wills) are appropriate for noting such wishes. However, there is much more to consider. Aging with Dignity, a non-profit organization, has a mission to “safeguard the human dignity of people as they age or face serious illness.” The organization provides education and support to include end of life planning via the Five Wishes Document. The five wishes we need to know, for our parents, and ourselves, follow.
1. Making Decisions
Who will make decisions for your parent if they can’t? What if your parent is widowed? Without the benefit of a legal document assigning decision making duties, the law will determine who can make the necessary decisions. The “chain of surrogacy” is generally the determining factor and goes in the following order; spouse, adult child, either parent, siblings, and finally any adult grandchild. In the absence of family, a close friend may become the decision maker or a guardian may be appointed. Find out who your parents trust to make their decisions. Knowing who your parents would want to make decisions for them is important when it comes time to honor their end of life wishes. Assign them as their “Health Care Agent.” Whom do you trust to make decisions for you? Do they know? Does your family know?
2. The Care I Want
If you are your parent’s Health Care Agent, do you know how they wish to be cared for at the end of their life? Do they want heroic measures? What exactly are heroic measures? Your parent may have different wishes based upon circumstances. For example, your parent may have told you he or she would never want to be placed on a breathing machine. However, a ventilator (breathing machine) might be necessary for support after a surgical procedure without providing heroic, life prolonging measures. The Five Wishes document helps families and their parents understand the choices they can make while providing a legal document in which to declare them.
3. Keep Me Comfortable
There are three things that every patient wants; to be cured, to be kept comfortable, and to be treated with kindness. When a cure is not possible, comfort is of the utmost importance. Comfort comes in many ways which surpass pain medication. How will your parent want to be cared for physically and by whom? Do they find music soothing? Do they wish to be cared for with happiness, celebrating their life, versus sadness? Do they wish to die at home?
4. Be Nice to Me
Kindness is equally as important as comfort. It may surprise you to see this among the five wishes. However, each of us responds differently to acts of well-meant kindness. What does kindness mean to your parent? Will your parent want clergy to visit? Are there people they don’t wish to visit? Do they respond well to touch?
5. I Want My Loved Ones to Know
The fifth and final wish in the document covers remaining wishes regarding what happens after death. Desires about memorial services, burial versus cremation, religious ceremony or graveside only can be noted. Additionally, the opportunity to share anything else loved ones should know is given via statements that can be checked or crossed off accordingly. These include how they wish to be remembered, finding peace and forgiveness, and respecting their wishes. Space is given for any items they would like to add.
Why Five Wishes?
Families and loved ones must remember that the end of life is happening to their parent not to themselves. This is a hard concept to wrap your arms around particularly during the event itself. Yes, you are experiencing the death of a loved one. However, it is their death. It is a gift to be with your loved one, parent or other, when they are dying. Being there to honor their wishes, to provide support, love, care, comfort, and kindness is the best possible way to ensure they die with dignity. The Five Wishes document can ensure your loved one’s desires for end of life care are respected thus allowing them a dignified death.
The Five Wishes document is honored in 42 states (visit agingwithdignity.org for more information). Even if you or your parents do not live in one of the 42 states, the document is useful for starting the conversation. Ask your parent’s doctor, Care Manager, or Geriatric Manager for a copy. A completed document can be tremendously helpful in the effort to ensure your loved one’s wishes will be honored.
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