prolonged dying

The day-to-day life of a palliative care nurse, involves seeing patients who have been critically injured or have a chronic illness they are dying as a result of.  When meeting with them (and their families) the most often UN-asked question is "how long do I/they have?".  When people don't ask, it's usually because they are afraid, because they think the doctor would tell them if they knew (don't bet on it), or sometimes they just don't want to know. 

When I have a meeting where no one asks,  I usually bring it up, and find out if they want to know what I think.  Sometimes they do, sometimes they don't.  Family members often do.  If they want to know, and the patient doesn't, we talk outside the room.  These conversations always begin with the fact that accurate prognostication is one of the most difficult things we do.  It is also accompanied by an explanation that we are likely to be wrong, that we use the best tools we have, and it's important for them to understand that everyone's body shuts down in it's own time. 

This week I took care of an 80 year old woman who was imminently dying for 5 days.  Each day on our rounds, I could see her children questioning themselves, wondering if they did the right thing.  "If she is taking this long to die maybe we gave up on her too soon?"  People are surprised that someone can live for days and even weeks without eating or drinking anything at all.  But they can.  And they do.  And it doesn't mean a wrong decision was made, it just means there are things we have no control over. 

We do have control over making sure dying people are comfortable, that their family members are supported, that we visit them often even though there is nothing to offer other than support,  answering questions, telling them what we are seeing, and providing reassurances that they are doing the right thing.  Prolonged dying is a recognized phenomenon in the medical literature.  We can't predict which patients may experience it.  My hope is that this 400 word tutorial on the topic will help YOU know it happens.  Regularly. 

We are all in this living and dying thing together.  I like to think one day we'll be as comfortable talking about, and supporting each other through dying, in the same way we do the other ordinary moments of life.  

Comments

[Denise Henderson]

Thank you for the reassurance. Your words make me feel better about decisions I've made and will make in the future.

[Vicki in Michigan]

Thank you, Carol. I appreciate you sharing truths with us, especially about end of life, because I think our culture doesn't handle it well........

[Diana]

This is helpful, Carol. My dad has metastatic prostate cancer and besides my mom's care, is being helped by hospice at home. He's not at the end yet (though we thought we were going to lose him in early November when he wouldn't eat) but it is coming, and this is good to know.

[Dotti C]

Great article! I think the two biggest physical changes we go through are the beginning and the ending of life. We all know how most folks embrace change even when we have the capacity to know about it and deal with it...with great trepidation!

My husband was a hospice volunteer for years and every time he lost a patient he met it with surprise and grief...as if the death was unexpected. I would have to remind him that the pre-death days were why he was there in the first place.

Strange how that works!

[Debbie]

Thank you for the work you do and the compassion and care you share with others. My brother had been struggling with heart problems and had been on dialysis for years. He died peacefully in his sleep this past weekend...in his home. Unfortunately, my SIL woke to find him gone, so now I hope to be able to offer support to her. She is also dealing with health problems...she has cancer and is going through chemo. We struggle to understand why all of this pain happens to such good people, but we have to continue to live as best we can. My brother Bob was only 60 years old and he & Cindy were married for 28 years. Hug those you love and always tell them you love them. I'm grateful he didn't have a lingering death, but this sudden death is still not easy to deal with. I am trying to find comfort in the fact that his struggle is over.

[Linda Watson]

My goodness but you are a blessing. In my very limited experience, as a friend and as a practitioner in my church, it seems to me that a person will often wait to die until everyone leaves the room. I've been there when that wasn't true, but many more times, that person left when he or she was alone. I've puzzled over this for years, not in the least certain that there is any kind of an answer, but perhaps there are, for some, things best done on their own? Or maybe thinking it is less upsetting? Haven't a clue, or even certain this much thought is going on with the person, just something I've noticed.

[robin]

Thank you for what you do, Carol. I watched the hospice workers come in and visit and care for my mother and it was such a positive experience for all of us. They were strong and caring and they answered all our questions with love and respect. I now have stage 4 cancer and while it isn't my time yet, I know that hospice will be there for me and my family.

[SUSAN SEWELL]

Thank you.

[barbara]

Your posts on this subject are always so thoughtfully written. I have shared a few of them with my family, in our many discussions we've had on this subject. When my father was in hospice care, we were so grateful for them. Even though we knew his time on earth was coming to an end, we experienced the peace and tranquility that all of the hospice care givers had to offer us, and him. It made such a difference in the way we handled it. We have all had the talk, and know when it comes time to call them for my mother, we are prepared.

[Kathy]

Long time reader of your blog I remembered your words and discussions about palliative care and was able to involve a similar team for my mother when the time came. My family didn't understand at first but it went exactly as you just described. Those 5 days were hard to watch but we knew she was comfortable and we were supported.Thank you for your reassuring words.

[Leslie J. Moran]

As always, the answers we need when sometimes we don't even know the questions. Thank you - forever.

[Missy]

Amen.
Kindest regards,missy from the bayou

[Jan]

Thank you for this post. My mom died 13 years ago. She held on day after day ... we couldn't figure out why or how. They kept asking me if I'd told her it was OK to go. I had, several times. Then one day a granddaughter showed up, one she hadn't seen or talked to. And the next day she died. Apparently she'd been waiting for Melanie to show up. My husband died 7 weeks ago. His care provider was skilled in hospice. He asked me if I wanted to know what would happen and approximately when. My husband didn't want to know and I didn't either. Luckily he was able to let me know gently that I needed to say goodbye and was there with me when he passed. It was so helpful to know what was happening physically. Bless you for the work you do!

[Peggy Fry]

I think leaving this world is every bit as hard as it was getting into it. Hospice people are remarkable and wonderful. It takes very special people to do that. And yes, I think dying must be a very private, intimate thing and that many of them do choose a time when they are alone. My husband chose the moment when I was looking away, distracted by the TV. The silence is what alerted me to his passing. I still dream about that moment. I hope he is okay now. Thank you for sharing this with us all!

[Pam]

Palliative, palliative, palliative...angel, angel, angel. You are.
Thank you for this post and all of them, really.