LESSONS FROM HOSPICE: Nobody Dies Alone (Not)

Recently California passed  Right to Die legislation, allowing the terminally-ill to seek their physician’s assistance in committing suicide.

Many people have valid arguments against this legislation. Almost everyone I’ve met who works in hospice and palliative care are dismayed. Too often, hospice is not called into such a situation until the last minute. Most hospice clients receive care for less than 14 days. More than half of those clients, less than a week. Many, if not most, of the issues that Right to Die legislation addresses, could be alleviated by hospice and palliative care, including patient comfort and support. Research shows that clients in hospice care live longer and suffer less than those in standard care.

But that’s not what moved me to write today. There was a letter to the editor from a grieving person, who provided round-the-clock care for their spouse until the very end. The person said hospice can’t do what they did–sit with their spouse until their loved one died.

Which, believe it or not, is not always a good thing.

Somehow, being with someone while they die has been synonymous with ‘best practice’. “Nobody dies alone!” And when people can’t be there for that final moment, they often feel a sense of failure and guilt.

Meanwhile, those of us who are involved in hospice care, notice something totally different. Something that we noticed in almost all our cases….

Most people die alone. And though obviously we cannot know what someone’s final thoughts are, it sure looks like their choice.

We’re often called on for what we call a ‘vigil’. There’s no one to sit with the person who seems to be actively dying–family members are out of state, or can’t be there 24/7. Volunteers sit with the client in shifts. But we never provide round-the-clock care. And that’s a good thing, because the truth is, sometimes people need that time to themselves, to choose when they would die.

Read that again: The circumstances where someone in hospice died was often so responsive to what was going on around them–even when they were unconscious or unable to respond–it looked like they’d chosen to leave at a specific time.

In the five years I served as a hospice volunteer, I saw many extremes in outcomes around this.

I had a client who was mobile, and aware, who had “months to live”, who died within a day of her own daughter (also her caretaker) being diagnosed with breast cancer. (Her daughter chose put her in respite care for the weekend–two days–just so she could process the news.) As if my client were saying, “I’ll be okay, but you need to take care of yourself now.”

I know two people, siblings, who sat with their dying parent all night. When it was one sibling’s turn, they fell asleep briefly.  And in that short span of time, their parent died. As if they were saying, “I love you, and I don’t want this to be your last memory of me.”

I know another client who died, again while a family sat holding their hand, asleep. It was the family member they’d had the most contentious relationship with. As if they were saying, “Please forgive me.”

Another client who had mere days, perhaps hours, to live, held on for over three weeks. Immobile, usually unresponsive, unable to eat nor drink anything except a few tablespoons of ice cream and soda during that time, yet they hung in there. One of their attendants, who’d become close with her, was expecting a baby. She was two weeks overdue. I believe my client was waiting for the baby to come.

I don’t know how many times I, and my fellow volunteers, someone would say to us, “We kept watch, we took turns, someone was there with them every day, every minute! They were never left alone! And then one night, on my shift, I went to the bathroom–I was only gone five minutes! And when I came back, they were gone. I still feel awful.”

The sense we are all left with is, sometimes there seems to be a choice, when to stay, and when to go.

Sometimes it seems obvious the person is dying doesn’t want their loved one to witness that.  For whatever reason, they wait until that tiny moment of time where they are alone–and they go.

Sometimes it seems they are waiting for someone–an out-of-state family member, a new baby–to arrive. They hang in there until the person either comes, or until the client can’t hold on any longer.

Sometimes it seems that they are waiting to hear something.  Perhaps someone who has to let go, someone who has to tell them, “It’s okay, it’s hard, but I’ll be okay. You can go”. Or for someone to say those four powerful statements: “I forgive you.” “Please forgive me.” “Thank you.” “I love you.”

So if this has happened to you, please don’t despair. There is no predicting how close someone is to death. Hospice and palliative care do the most good the sooner they can be brought in to provide services.

But even with the best of care, the best intentions, this was one of the most amazing, the most…okay, I’ll say it: miraculous thing I saw in hospice.

This is something I’ve been thinking about for a long time, and it’s surprising difficult to write about. But it’s important.

How our loved one leaves us, is often their last gift to us.

 

 

 

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16 thoughts on “LESSONS FROM HOSPICE: Nobody Dies Alone (Not)

  1. this happened to me. twice. Kathryn Corbin Brown-Corbin Fine Art 40 Laurel Drive Lincoln, MA 01773 Home/Office: 781-259-1210 Mobile: 617-513-6241

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  2. Thanks, Luann, this was a wonderful message. My mom was dying in October and I was at her side on her final night. I read some, then told her she could go anytime, then read, then held her hand. Suddenly, I remembered I hadn’t fed my cat and it was midnight. I decided to run home to take care of him and soon after that, I got a call from the hospice nurse that Mom had passed. I agree with you – she wanted to do the final exit on her own. I was totally at peace about it – she was on to her next grand adventure and we’ll meet up later, I’m sure.

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  3. its so true. I experienced it with my parents, and my husband with his mother. All slipped away when the room got quite on a night we were assured would not be their last, yet within minutes of our leaving. The nurse in my father’s case said this is so common that she has come to believe, as I have, that they dying sense when their loved ones are absent so as not to have them witness their passing. It certainly went a long way to absolve my guilt atone being present, and made me realize that our guilt stems from our assumption that no one wants to die alone. In fact, that may be the ideal way to leave, and seems far more peaceful for them. In the end, that is really what we want for them, and we may in fact be giving them a gift by letting it happen without us. Thank you for your commentary. And Happy New Year. Kathryn Kathryn Corbin Brown-Corbin Fine Art 40 Laurel Drive Lincoln, MA 01773 Home/Office: 781-259-1210 Mobile: 617-513-6241

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  4. Nicely said, Luann. I went through this with my mother this summer. Four children, grandchildren, spouses, great grands were all around during Mom’s last days. Early on a Saturday morning she told us she was transitioning. We talked, we held her, we watched her leave us. Everyone had gone to bed, I told my sister, let’s go in the other room to talk and let mom be. Ten minutes later when I went in to give her the morphine, she was gone. So quiet. So peaceful.

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  5. Luann, I’m grateful for the final moment of my mother’s life. I always knew hospice was a wonderful organization, because my father-in-law received such awesome care in his final days that he lived 10 months longer than the doctors had foretold. So when it was time to ask for hospice care for my mother, I knew it would be good. Mom received hospice at a hospice center. Her room was lovely, there was a patio with a grill outside of her bedroom door. I have five siblings, four of which live in town. We had two wonderful impromptu dinners together and each night those of us who stayed by her side we were given a place to sleep in her room. The moment Mom left us, we had the gift of being by her side. Mom once told me she didn’t like the thought of death because it is the only trip you have to take by yourself. I believe this was a blessing for both her and us! Thank you for always sharing your inner thoughts!

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  6. I too have been a witness to this: sometimes the choice is to have someone there at the moment of death, sometimes it is the opposite.

    Hospice care is a blessing. Unfortunately, in some places the care sought is not always available as early as it should be. That can and should be remedied. You are correct, hospice would diminish the number of people who sought an early death.

    Thank you for a well written and thoughtful post.

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  7. I agree completely with you, Luanne! I’ve seen this several times with friends, relatives, patients. My grandmother, who was like my big sis, died the night after I got home from college, after we were delayed four days because of -40F in January’61. I graduated early because I knew she wanted to be sure I made it. Semicomatose, she held my hand and nodded and was gone with a big smile. When things were tough in med school or in my practice, I remembered her .

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  8. Thank you for sharing this. My mother, with whom I spent 24/7 time with when she was dying in the hospital died when I went to the bathroom. This has given me a beautiful insight into her “choice”…

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  9. Hi Luann, I was clearing my mail box, and came across this post. Unfortunately I didn’t get a chance to read it when you posted it. My dear cousin passed away a few weeks ago and I’ve been struggling with it. In search of some wisdom and understanding I found a wonderful book in the library, Tuesdays with Morrie. Perhaps you’re familiar with it, I found it quite helpful. In particular, not knowing how to say “goodbye.” Morrie told his student, that was saying “I love you.” That one bit helped me immensely. I know have a seen a closure. In addition I’ll add my father died the night we weren’t there. And I understand and have to agree with your post. Thanks for writing about it. As you said no one talks about these things.

    Linda M. Olszanski

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