As my mother bounced from hospital to rehab to hospital to rehab to hospital to rehab and back to hospital again, she became more and more frustrated.  As she fought one infection after another, she became weaker and weaker.  As medical professionals persisted in employing all manner of tests, procedures, and surgeries to try to extend her life, despite only a tiny possibility of success, she became more frail and more sad. She knew there was very little anyone could do to increase the time she has left.  She could also feel the quality of that remaining life spiraling downward each day.  

Most people will tell you they wouldn’t want to undergo any extraordinary or invasive measures if they were in my mother’s condition.  It isn’t as simple as that sounds.  The trick is in defining “extraordinary and invasive measures.”  By the time my mom was in the hospital for the last time, nearly everything qualified as invasive from her perspective.  And her perspective is really the only one that matters.  She didn’t want any more hospitalizations, surgeries, medical tests, or IV lines.  She didn’t want to move out of bed or do therapy.  She certainly didn’t want a feeding tube or, even, to be badgered to eat when she didn’t feel like it.  Sometimes, people feel like this because of depression and that depression can be managed with medication.  In my mother’s case, it felt more like she just wanted to be comfortable.  For whatever time she had left, she wanted to be able to decide not to put herself through anything that she found painful, uncomfortable, or annoying. 

It wasn’t easy getting to this point.  Because of the stroke, it is sometimes difficult to understand what my mom is thinking and feeling.  Her language is definitely limited and she is very hard to understand.  At times, it seems certain that she is thinking clearly, even if she cannot express herself very well.  At other times, it seems like her cognitive ability is impaired as well.  In addition, it was difficult for me to find the place in my mind and heart where I could let go of what I wanted and concentrate on figuring out what my mother wanted.  I considered what I know of my mother’s views from before she had the stroke.  We had numerous sad, cobbled conversations about life and death after the stroke. I am pretty sure I understand what she wants.  She chooses to let go of trying to get “cured” and live whatever time she has left with comfort and some modicum of control. 

As difficult as it was for me to face this crossroad and as difficult as it was for my mother to come to this choice, it is even more difficult to convince the medical system to let go of “cures.”  Fighting this battle requires clarity of mind, courage of conviction, and persistence.  Take it from someone who could barely articulate the choice without crying.  You will probably have to cry often and painfully if you are trying to help a loved one free herself of unwanted, invasive medical procedures.  This is especially true when the loved one has a disease that isn’t causing unbearable physical pain and doesn’t have a clear, common progression towards death in the immediate future.   

I don’t really blame the medical establishment.  Hospitals, rehab facilities, and most doctors are charged with curing and preventing the risk of further damage. They have legal liability if they don’t do everything possible to try to “cure.”  Their collective mindset is to look at the patient as a problem to be solved.  They will usually keep trying to think of something else to do, some other medication to try, some different procedure with which to tinker… just in case something will help.  If one thing doesn’t work, they try something else.  If you have decided to forgo the small chance of a “cure” in order to have peace in whatever time you have left, you will likely have to repeat and argue your position over and over again with the mainstream medical professionals. Working with most medical professionals in that situation is rather like employing a dance instructor when all you really want to do is buy tickets to a ballet… and the dance instructor finds it morally repugnant that you don’t want to don a tutu.   

You may think that the answer is simply to stop engaging with doctors and other medical professionals.  That might be an effective strategy but for one reality.  By the time most people are ready to stop fighting for life at any cost, they also need medical professionals to help with symptom management and assistance with activities of daily living.  

Just when I thought I could not articulate my mother’s wish to refuse any more medical intervention one more time, one of the doctors at the hospital mentioned “hospice.”  He was pretty judge-y about her choice and made me feel horrible discussing it. At least, though, he led me to the proper vehicle for implementing it.   Apparently, identifying an individual as a “hospice patient” helps to indemnify the doctors, hospitals, etc. against litigation.  It is the formal way a patient and her family to go “on record” as not expecting the medical folks to try to extend life. It gives permission to change the focus of the care from “cure” to “comfort.”   

When someone mentions “hospice,” it often feels sad and defeated and scary.  People tend to think it means the end of a life.  It certainly can.  Hearing the word “hospice” did feel like someone was prying a chunk of my heart out with a hot knife. Still, when I was able to wrap my mind around the idea, the hospice counselors were a huge help in explaining the program, giving me an idea of what to expect, and validating that the choice we were making was a morally valid option. 

Hospice care is usually available for people expected to pass within the next six months, but no one ever really knows for sure how much time anyone has left. In my mother’s case, the choice to embrace the hospice path means something quite different than a choice to let go of life.  It means a choice to stop struggling.  It means a choice to live the rest of her life on her own terms.  It means a choice to spend her time engaging with her loved ones.  It means a choice for freedom to spend the rest of her life in comfort and dignity.  It is a choice for peace.

Does anyone else have a similar experience that they would like to share?  It might help someone else who has to go through a difficult time.  Please share your perspective by leaving a comment.  In the alternative, you can email me at


8 thoughts on “Choices”

  1. This is such a difficult time for you. I remember I was the person to decide for my aunt and my uncle when that time came. I did use hospice for them both and what a comfort that was for me. I had many times when they called me thinking my aunt was ready to die, but then it showed that she was not ready …yet. So glad you have hospice to help you through this time. May the Lord comfort you in the times of waiting not knowing, of course, the exact time.

    Love, Lois

  2. Hospice came to my mind well before I got to that point in your blog. I am so happy you did get there as well. My dad went through hospice care and I’ve been a strong believer (and supporter) of them ever since. They were wonderful to my dad and really supported my mom through his last few months…. even helping us through turning off his internal de-fribulator knowing that the next incident would be his last. (The pain of the shock to his body when that happened was too much for him, he was so weak and frail.) I think the hardest thing for me was praying at one point that he would pass since he was in so much pain, even with pain management. So yes, I understand the difficult decisions and end-of-life choices. Prayers to you at this difficult time.

    1. I’m sorry for the difficult time your family experienced. My mother, fortunately, is not experiencing the physical pain that your father suffered. She is weak and frail and fading, but I don’t think she is in physical pain. The emotional pain of seeing her mind crumble a bit at a time is the hardest part for me. I can see that she understands enough to know she doesn’t understand as she used to understand. That breaks my heart. Thank you for your prayers.

  3. Hi Terri. I really admire your courage, strength and love in putting your mother’s wishes and needs at the forefront. So many families fight to keep their family member alive and all those procedures and interventions really don’t prolong their life, let alone give them comfort.
    My mom elected and strongly wanted a heart valve replacement when she was in her mid-eighties. Indeed she was experiencing many symptoms because of the leaking valve. Unfortunately, she had a stroke during the surgery and never really came back.
    I flew out to help my sister find a suitable nursing home with hospice. However, the night after I sat by her bedside, holding her hand, she passed away.
    However, I have seen many people elect hospice (I’m a retired nurse) and everything is about the patient’s comfort. They’re great with equipment, as well as medications, etc., all to make everyone, patient and family, go through the passages as well as possible.
    Take care and wishing you and your mom the very best in your love for each other. Joy

    1. Thanks, Joy, for your encouragement. It is a very painful journey, but all I can do is my best and try to cherish the good times.

  4. Hi Terri. Thinking of you at this difficult time. You are right, the medical profession is so programmed to medically intervene, and sometimes it is to the detriment of what is best for the patient. That’s where family/friend advocacy come in.

    So glad you found Hospice to be so helpful. Sending you healing thoughts as you find peace with the decisions made on the behalf of your mom. She is lucky to have you looking out for her!

    1. Thank you, Carole. I’m sure many people could have managed this situation much better than I have, but I really wonder how patients who have no one to help them are able to deal with everything. In addition to companionship, medical decision making, and advocacy, there is so much administrative work that needs to get done. I have to wonder who does all that if there isn’t a responsible family member close enough to handle it all. I keep waiting for all the “business” stuff to be done, but i just keep encountering more and more. Both my heart and my brain are full!

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