If someone you love has died, you may be familiar with hospice. If you aren’t, a good and compassionate introduction is a new book by Larry Patten, A Companion for the Hospice Journey. Patten carefully lays out what hospice is, what the different people on the hospice team do (doctor, nurse, social worker, home health aide, chaplain), and answers the common questions people have.
When you hear that someone is going into hospice, you may think it’s a death sentence. The criteria for being admitted into hospice care includes that doctors have nothing else they can do for the patient, and the person is expected to die within six months. As I learned when my dad was being considered, you can come out of hospice if you are doing better than expected.
Going into hospice does not mean you are giving up. Nothing that hospice does shortens your life, Patten says. Hospice is about stopping the pain and suffering, and taking care of basic health needs. This enables people to stay at home and be comfortable for their last months and weeks rather than staying in a nursing facility, or being in a hospital trying every surgical procedure and every new chemotherapy.
Hospice also has volunteers who come for a few hours to allow family caregivers time away to shop for groceries and recharge their batteries.
Doctors often regard death as the enemy and are focused on defeating it at all costs. They neglect to ask patients what they would like. You are the one who is in charge of your medical care. If your primary doctor doesn’t think an ache that won’t go away is serious, see another doctor. I’m tired of hearing about another friend who waited too long and now has Stage 4 something.
One of the matters Patten mentions is the wisdom of discussing end-of-life matters now, because people die unexpectedly all the time. Then, if the unexpected should happen, the family knows what we want done and they don’t have to agonize over making decisions like resuscitation, organ donation, and cremation or burial.
My parents were reluctant to make decisions, so we, their children, kept pestering them until they had a plan for things like wills, which of us would have durable power of attorney if both were incapacitated, and what nursing home they wanted to go to if they needed one. They were in their late 80s and early 90s at this point and we thought it was time they decided.
In case the unexpected happens, figure out what you want done and share this with your family and your doctors.
A number of my friends died in their 20s in car accidents. My wife Evelyn died in her 40s of an unknown heart problem. We hadn’t talked about end-of-life details because we thought we had plenty of time.
Hospice also provides support groups for survivors so they can meet with others who have had a similar loss and build up a support network. As with everything else in hospice, if you don’t want that service, you can turn it down.
One of the nuggets of the book is the chapter on the Worst Hours of the Day. This is when you habitually did something with the one who died, and now that he or she is gone, you feel a deep emptiness every day at that time. Patten offers suggestions for how to deal with this.
Decide now. You can always change your mind about what you want done, but not if you haven’t decided.
For more on end-of-life decisions, read “Thinking About the Unthinkable.” https://widowersgrief.blogspot.com/2015/08/thinking-ahead-about-unthinkable.html
For more on dying and Atul Gawande, read “On Dying.”
For what people in hospice want to talk about, read “Have No Regrets.” https://widowersgrief.blogspot.com/2017/07/have-no-regrets.html