Austin Photographer Carmen Buck Preserves Alzheimer’s Families’ Dignity and Memories With Pictures
Alzheimer’s Texas, By Carmen Buck
This month we have a special guest author for our Alzheimer’s Texas Blog, Carmen Buck, former nurse practitioner who has helped many families cope with the challenges of dementia.
Sarah and her father discussed his Living Will 10 years ago. Howard went to his attorney and updated his will, created a living will, a medical power of attorney (assigned his daughter as agent) and a power of attorney about 10 years ago. He and his daughter Sarah talked a little about his wishes but the topic was uncomfortable and anyway, they thought they weren’t going to have to worry about it for a long time. The living will was tucked away with other legal papers and not thought about until he was recently diagnosed with Alzheimer’s Disease. He reminded Sarah of his living will and advised her that he wanted to be at home until he needed more care. He didn’t want her to worry about him. He even went as far as to choose a long term care facility for himself just in case. He also told her that when he was moved to the long term care facility, he wanted his medications and any assistive devices discontinued. These details were in his living will 10 years ago.
Sarah wants to honor his wishes, but can’t imagine how she will make that decision on his behalf when the time comes. She worries most about stopping his medications. She’s not quite sure if the Living Will is the same thing as Advanced Directives or the legalities of his papers.
What should Sarah do?
It is important to be informed. Sarah needs to know about the various legal documents.
Definition of terms:
The will is a legal document stating who gets what after you pass. Legal guidance is generally required.
A health care proxy, also known as a durable medical power of attorney or health care power of attorney, is a document that appoints someone you know, often referred to as an “agent,” to make health care decisions if you aren’t able. While the living will indicates whether you want to remain on life support, there may be other decisions to make before your health care providers reach that point. It is obviously very important that your health care proxy is aware of your wishes and that you trust they will follow through on your behalf.
A power of attorney is a legal document that allows someone to make financial and legal decisions for you.
A living will is a legal document which states your wishes about life-sustaining treatment if you become terminally ill or permanently unconscious. It is different from a health care power of attorney which designates someone to make decisions for you. A living will describes what you want or don’t want in writing when you aren’t able to speak for yourself.
- A living will becomes becomes effective if you can’t communicate your wishes and are permanently unconscious or terminally ill.
- It states whether you want life-support to be used as well as other details of your care. This can be simple or detailed. The more detail you include, the less burden falls to your health care proxy.
- The living will gives doctors the authority to follow your instructions about medical treatment.
It can be changed or revoked by you at any time but cannot be changed or revoked by anyone else.
Sarah has reviewed her father’s living will and durable medical power of attorney and legal power of attorney. She is his designated agent. She is still worried about being able to honor his wishes and isn’t sure what to do.
How can Sarah feel better about her father’s end of life choices?
1. Start Where You Are- Sarah knows what her father’s wishes are based only on what he has written. They haven’t talked about details though. She can talk with him about the details of his wishes. See #2 below. Clarity will help because Sarah’s fears are of the unknown. She worries what will happen ‘if this’ or ‘if that.’ Sarah’s situation is arguably easier than those who have never discussed or documented end of life plans. If there is no living will and the end of life issues weren’t discussed in the past, the decisions have to be made based on what they believe their loved ones would have wanted. If you can, discuss end of life choices before they are needed and as early as possible. It can easily be updated and should be reviewed during the following instances:
When there is a divorce
When chronically ill, or there is a change in your health status
During every decade of life or every 10 years
If you receive a new, life limiting diagnosis
2. Act with Compassion. End of life and advanced care planning discussions can very difficult to bring up, talk about and follow through with. Action must be taken though. Begin from a place of compassion. While it may be uncomfortable to discuss, a peaceful death is something we all want. Discuss the topic from a place of love and compassion. If your healthcare provider does not bring it up to you, bring it up to them. Ask the serious questions that you need to know such as those about what to expect with the disease and what is the life expectancy. The more information you have, the better equipped you are to make decisions. Be sure your wishes are known. In Sarah’s case, she knows her father’s wishes but worries about him if all his meds were stopped. She may wish to clarify the terms (see #4) with him so that she can better understand the details of his directives. For instance, Sarah wants him to be comfortable and worries if pain meds will be withheld (he wants no meds) if he has pain. She might ask him what he would want if he is in pain. They can seek the advice of his healthcare provider who can provide some options. I used to sit with families and go through the meds one at a time to help patients and families make the best decision for them. Typically, some meds were continued and others were not. The living will can be amended to add more details. On the other hand, he may tell her he doesn’t want it changed. Either way, she can feel more at peace knowing they talked about it, and she is honoring his wishes.
3. Be open to possibilities- If your loved one is not able to make decisions on their own, the burden falls to the next of kin or whoever is identified as the health care agent. Let’s talk about ‘substituted judgement’ versus ‘decisions in the best interest of the patient.’ Substituted judgment refers to considering how the patient, if able to fully understand his or her condition, would make the decision. The patient’s values are paramount. In other words, what would they have wanted? Best-interest decisions are made when families or individuals use their own values to make the best decision on the patient’s behalf. This is, in part, Sarah’s concern. She is torn between what her father has requested and her responsibility to honor those wishes (substituted judgement) and her own ‘best interest decisions’ which are based on her values. This is totally understandable and likely unavoidable. No matter how much we wish to honor the wishes of someone we love, our own wishes, our hope for more time with them and even guilt come into play. Recognizing this When we know that we are honoring our loved ones wishes, guilt and burdened are typically lifted significantly.
4. Understand the terms and ask your healthcare provider for guidance. These are details Sarah needs to talk about with her father. They both need to be sure they understand the terms in the same way. Here are a few important terms:
- Do everything- This means that all medical interventions will be considered including cardiopulmonary resuscitation (CPR), intubation (breathing tube) if needed and so on.
- No Code or Do Not Resuscitate (DNR) means that CPR will not be done in the event that breathing or the heart stops.
- Stop devices- pacemaker and defibrillator. This is something to be discussed with health care provider, of course.
- No feeding tube means that if you or your loved one is not able to take adequate food or liquids a feeding tube may be inserted to maintain hydration and nutritional status. As death nears, the body will shut down and appetite drops considerably.
- No medications- This might mean absolutely no meds or perhaps only essential meds such as those for blood pressure or those for comfort such as pain meds.
5. Be sure all health care providers have copies of the power of attorney and living will. Don’t assume they know and have records of it. Review it regularly and update as needed.
6. Understand Your Motives. Medical studies have demonstrated that end of life care for elderly is often too aggressive1. Health care providers are human too. Our world is often focused on ‘curing’ and when people don’t get better, even when its a natural course of the disease there is often a sense of failure. There are many other factors as well. With all the medical advances, it seems like there is always something we can do to extend life even if there isn’t. In fact, sometimes the medical advances cause more discomfort with little hope of extending quantity or quality of life. I can’t tell you how many times tearful eyes look at me and asked, “Isn’t there something else we do?” In this case, we have to remember that healing can take place while making the most of the time we have to say good-bye and experiencing a peaceful death.
If Sarah came into my office with concerns about her father’s Living Will, I would ask her about her fears if her father’s wishes are followed. I would assure her that her concerns are valid because they would be. I would ask her how we can best help her and her father during the last years, months or days of his life. Often simply being acknowledged and having the opportunity to talk about our fears is enough to find peace in the pain.
Nordqvist, C. (2013, February 6). “End-Of-Life Care For Elderly Often Too Aggressive.” Medical News Today. Retrieved from