Importance Of Talking About End-Of-Life Decisions

[ photo by Alena Beliaeva ]

Talking about end-of-life decisions can be hard.

I spend many of my blog posts discussing how to handle situations you might currently be involved in with your aging parent’s care. More often than not, clients I have counseled through Chartered Care are actively involved in managing their loved one in a current crisis. Naturally, the patients I care for in inpatient rehabilitation and their loved ones, with whom I work, are also dealing with an active situation.

In the majority of my encounters with these situations, these situations were not planned. No one plans to have a stroke or a spinal cord injury. No one plans to get dementia or become debilitated after a prolonged illness. In so many of these situations, the person who is ill is no longer able to make decisions for himself. He has lost decision making capacity. That is when the decision falls to you, the caregiver, or whomever is legally declared the medical power of attorney.

I have been involved in more situations than I can count in which a drastic decision has to be made regarding life-saving treatments in which the ill person cannot make the decision.

Making the decision for end-of-life care can be even harder.

Do you intubate her (put her on a breathing machine because she cannot breath on her own)? She cannot be weaned from the ventilator. Does she want a tracheostomy performed (placement of the breathing tube through an incision on the neck through the trachea) or would she rather be removed from the breathing machine and allowed to pass away peacefully with the appropriate medications on board?

His heart stopped. Would he want CPR performed even though his quality of life would be quite poor if his heart does resume beating? What about the question of if he would want a feeding tube placed in his belly to provide the nutrition he needs because his dementia is so far along that his body does not even remember how to swallow? 

This list of questions can go on and on. There are so many situations in which loved ones have to make the decision for the person that can no longer make the decision for herself. I want to encourage you to have those conversations with your aging parents when he or she can make their wants known.

Uncomfortable conversations about end-of-life care need to happen.

Yes, it can feel morbid. There are not very many people who want to talk about their mortality. Sometimes, however, uncomfortable conversations need to happen. Making these end-of-life decisions is never an easy process, but making the decision you know your loved one wants because you and that person already had discussed it is so much easier. 

Let me encourage you to discuss this amongst your loved ones. Find out what your parent deems a good quality of life. One person’s opinion of a satisfactory quality of life may be entirely different than someone else’s.

Ask your mom if there are any circumstances in which she would want to be intubated or to have a feeding tube or have CPR. Ask your dad the same thing. Talk to your siblings and your spouse. If your children are adults themselves, ask them. While you are at it, let your loved ones know your wishes for yourself too. 

One conversation is not enough.

It is really important to revisit this conversation too. Someone’s end of life wishes might be quite different when they are in their late seventies and facing multiple medical issues than when they were in their forties with children still at home. Her personal wishes might change too as her illness progresses. Having a change of opinion of what someone might want at the end of life is okay and normal! That is why having this conversation more than once is so important. 

In future posts, I am going to address next steps to take once these initial conversations are had, but I at least want to encourage you to get the ball rolling by starting to talk about it.

(Related blog posts: End Of Life Care At Home, Taking Care Of Elderly Parents At Home)

Feeling overwhelmed with the process?

Afraid you may not make the right decision at the right time? This stage of life for you and your aging parent often brings more questions than answers. Reading information from a trusted source like me can help guide you in the process. However, if you still feel overwhelmed, don’t hesitate to reach out to me. I am happy to help with a personalized plan for your unique situation.

© 2021 Jessica Kluetz, DO