Do Not Resuscitate (DNR) Orders: What Are They, and Should I Discuss Them With My Loved One?
Here are some steps that a family caregiver can take to confidently support their loved one’s wishes for end-of-life medical decisions.
When asked to identify the most challenging task they face as a family caregiver, most family caregivers identify taking on the role of medical decision maker for a loved one. Decision-making about “end-of-life planning” aka “advance care planning” poses the greatest challenge. A specific complexity impacting care for people with Alzheimer’s disease or other dementias is your loved one’s declining cognitive capacity and ability to participate in decision making about their own care. Here are some steps that a family caregiver can take to confidently support their loved one’s wishes for end-of-life medical decisions.
It is a fact of life that, at some point, we all are going to die. In the world of modern medicine, however, medical technology is capable of remarkable lifesaving and life-extending feats. These capabilities are valuable when used appropriately, but this same technology has the potential to extend a person’s life in ways that a person may not want or desire. It is the role of the healthcare surrogate decision maker, often the family caregiver, to ensure medical teams know what the patient’s wishes are for end-of-life care. Since Alzheimer’s disease is, sadly, progressive and incurable, talking to your loved one about their wishes for end-of-life is an important conversation to have as early in their illness as possible. (In some situations, it may not be possible or advisable and you, as their family caregiver, will make these decisions on their behalf when the time comes.)
Much of the approach to your loved one’s broader end-of-life wishes can be captured in a Living Will or Advanced Directive. You can find out more on these documents here.
A more specific document that is important for end-of-life considerations is known as a “Do Not Resuscitate” order (also known as a “DNR”). Unlike the advance directives above, this is a physician’s order directing a medical team to not provide resuscitation in the event an individual’s heart stops and/or they stop breathing. There are two scenarios in which this type of order is used.
For individuals in a hospital or other healthcare setting:
When an individual is afflicted with a life-altering illness such as cancer, heart failure, Alzheimer’s disease or other dementia that has robbed them of significant quality of life, they may decide that resuscitation and return to a life with the symptoms of the illness does not significantly add to their overall quality of life. They may choose a DNR order and the physician in charge will complete the DNR order.
For individuals living at home:
Individuals who are clearly in their last days of life from any type of illness, or for whom resuscitation is unlikely to bring them back to a life with improved quality of life may also choose to have a DNR order. In this case, there is a specific canary yellow DNR form that must be completed and displayed in the home or carried by your loved one. Medical personnel who respond to a 911 call will see that form will NOT attempt to resuscitate someone.
As these scenarios often present themselves in an emergency-type situation, having a clear idea of what, exactly, your loved one would want done for them, before it occurs, is of utmost importance. For some of our loved ones, they can be involved in these discussions. Other times, as the family caregiver/healthcare surrogate/power of attorney, you will have to represent your loved one and make the decision on your own and hopefully with the guidance of a trusted member of your healthcare team.
If you do involve your loved one in a discussion about this, here is some guidance for how to have this important conversation. Of course, given the topic you will want to take steps to reduce the emotional upset this could cause. If you are at all uncertain about your loved one’s ability to participate in this decision, ask your memory care specialist or other healthcare provider if they feel your loved one can fully participate and/or if it will create unnecessary stress.
Choose the Right Time and Setting. Make sure your loved one is in a familiar, comfortable, environment, and choose a time of day to speak when they are typically the most alert and calm. Consider asking a trusted member of your loved one’s medical team to be involved in the discussion. Some caregivers report that a good time to have such a disscussion is after the passing of a friend or family member.
Involve the Family: Bring in as many other family members as necessary, to make sure that everyone understands and respects the loved one's wishes.
Choose Your Words Carefully: Strive to communicate with empathy and clarity. Use simple, clear language and avoid medical jargon. Be patient and take time to listen to your loved one’s concerns and fears.
Focus on Your Loved One's Wishes: Emphasize that the discussion is about respecting their wishes and ensuring their dignity. If your loved one has previously expressed their wishes in an Advance Directive, bring the decisions made in that document into the discussion.
Provide Reassurances: Reassure your loved one that choosing a DNR does not mean they will be abandoned with no medical care, or not receive care that they do want. Provide emotional support and understanding throughout the conversation.
Start Slowly: Begin the conversation in a general manner, and then move to the finer details. For example, you might start by saying something like “I’d like to talk to you about potential health care decisions we may need to make in the future, so that everyone knows what your wishes are in case you become sick and are unable to tell us.”
Quality of Life: You can then ask your loved one about their concept of “quality of life”. Would they want to be alive, no matter what the circumstances are? How do they feel about a “natural” death, versus being kept alive through medical technology? What are their biggest fears and concerns about their “end of life” care?
Get Specific: Then, you can move to the specifics of how your loved one feels about emergency treatments like resuscitation. Explain what resuscitation can entail. Many people think of resuscitation as simply applying CPR, which is typically how it is portrayed on television and other media. However, resuscitation can also include putting someone on a ventilator, or breathing machine, by inserting a tube down the throat to sustain their breathing when their body cannot.
You might then ask your loved one whether there are any specific circumstances under which they would or would not want resuscitation. Remind them that the status of their health at present may not be the same as it is when an emergency may occur later in their life, when the question of undergoing resuscitation might come into play.
Confirm As You Go: As your conversation continues, make sure you clearly define and confirm what you believe your loved one is saying, such as “So, I’m hearing that you would like the doctors to do everything possible to keep you alive?” or “So, it’s my understanding that if your heart stops, you do not want medical personnel to attempt resuscitation?”
Bring in Professionals: If questions arise that you cannot answer, seek advice from your loved one’s primary physician, and others in your caregiving “village” as necessary before a final decision is reached. Once made you want this decision to be one you are all confident in.
Get It In Writing: If indeed your loved one does not want resuscitation, you need to set their wishes in writing, through a DNR form which you can download from the internet. This form must be downloaded and printed out on yellow paper, and signed by your loved one’s physician, to be valid. Make sure your loved one’s physician has a copy and have one visible in your loved one’s home (such as attaching it to the refrigerator) or carried at all times by your loved one. And if your loved one has a health monitoring device such as a fall detection bracelet, make sure that bracelet’s company has a copy of the DNR as well.
Discussing a Do Not Resuscitate (DNR) order with your loved one suffering from Alzheimer's disease or other dementia requires a balance of sensitivity, honesty, and respect for your loved one's autonomy and dignity. Finally, remember to seek support for yourself as well, as these discussions can be emotionally taxing for caregivers, too.
