by Karen Wyatt MD
When family members are called upon to make a difficult decision on behalf of a loved one at the end of life it can be one of the most challenging situations they’ve ever faced. This stressful time is made even worse if they have never discussed end-of-life issues and have no idea what their loved one would want for themselves. Many families experience conflicts during these times that can cause feelings of blame and guilt that last for years.
Every day in this country families struggle with difficult decisions of whether or not to continue medical treatment for loved ones who can no longer speak for themselves. In fact Pew Research Center estimates that about 10% of the general public in the U.S. will have to make such a choice on behalf of a loved one during any five-year time period.[i]
To avoid such a crisis when a loved one becomes terminally ill it is important to have a conversation now about their end-of-life preferences. But if there’s no time left and you find yourself in the position of having to make a difficult decision for someone who doesn’t have an advance directive, here are some guidelines for how to proceed:
Gather medical information first
Talk with your loved one’s doctors and get as many facts as you can. Have the doctors explain the diagnosis and any additional complications that have occurred. Ask about the effectiveness of the treatment being recommended, the chances for recovery or improvement, and any side effects or additional suffering that might be caused by the treatment. Also ask what will happen if treatment is stopped and the condition follows its natural course. You might even ask the doctors what choice they would make if faced with this same decision for a loved one.
Get expert advice
If your hospital has a palliative care service ask for a consultation. The palliative care team usually consists of a doctor (or nurse practitioner), nurse, social worker and chaplain all of whom have been trained to help with difficult medical decisions. They can facilitate a discussion with you and other members of your family and offer their wisdom and experience from different perspectives. As a team they will help you understand the medical information and explain all options available.
Remember past conversations
Try to recall any past discussions you have had with your loved one when the subject of illness of the end of life may have come up. Think back to a time when your loved one experienced the death of someone close, perhaps a parent or sibling. Did your loved one seem at peace and accepting of the death or fearful and resistant? Try to recall any comments made or issues that were discussed to get some clues about the choices your loved one might make for care right now.
Consider the statistics
According to the NIH most Americans say they want to die at home, even though the majority still die in hospitals, nursing homes or inpatient hospice facilities.[ii]
Also in a Pew Research Center study on attitudes toward aggressive treatment at the end of life, only a third of respondents say they would want everything possible done to keep them alive.[iii] The majority of people feel it would be acceptable to stop treatment in case of severe pain or incurable illness. Do you think your loved one would agree with the majority of people about these issues?
Ask your loved one for guidance
This last suggestion might sound strange if your loved one is unresponsive. But studies have shown that patients in coma are still able to hear when they are spoken to. Here is an exercise you can use to help you get in touch with the deeper wishes of your loved one:
Sit quietly at the bedside of your love one and hold his or her hand. Take some deep breaths to help you get into a relaxed state then say aloud or to yourself, “I have a difficult decision to make and I need your help.” Close your eyes and imagine that you are holding her hand across a table while you sit together and drink tea or wine or whatever would seem natural for the two of you. See her as healthy and vibrant as you ask her what decision she would like you to make on her behalf. Keep breathing slow and deep and wait patiently for an answer from her that might give you a clue about her preferences.
Even if you don’t hear an answer during this exercise you will at least know that you tried to find out what your loved one would prefer and that you’ve done everything you could to make the best decision possible. Trust your intuition or “gut” feeling as you have a final discussion with the medical team.
Be gentle with yourself
After the decision has been made and carried out, be forgiving of yourself for whatever happens next. Trust that your loved one knows you have acted from love and done your best to make the right choice. If treatment is going to be discontinued you might create a ritual to say goodbye and thank you for the life they have lived and the love they have given.
Whenever difficult decisions have been made it is normal to later have doubts and questions about the correctness of that choice. Recognize those feeling when they arise, acknowledge the pain, and then see that you are not responsible for your loved one’s life path even though the burden fell upon you to make a final decision. Life is a mystery and the end of life is even more mysterious. We cannot predict or control the events that happen … we simply must do the best we can with the options available to us.
[i] http://www.people-press.org/2006/01/05/strong-public-support-for-right-to-die/
[ii]https://pmc.ncbi.nlm.nih.gov/articles/PMC2708119/
[iii]http://www.pewsocialtrends.org/2009/08/20/end-of-life-decisions-how-americans-cope/
