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.