I've been attending hospice training these last few weeks, finishing up this morning, and absorbed wonderful information and inspiration. Without going into too much detail about HIPAA law and OSHA protections, I wanted to pass along what has interested and touched me the most.
Death and Dying
We spent a lot of our first meeting exploring our own notions of death and dying: personal experiences, religious beliefs, fears. I realized that death has usually been on the periphery of my life--(almost in order) grandparents, cousin, aunts and uncles, co-worker, young man at the school where I worked, a Chicago friend, church friends, playgroup child, friends' parents, pets--but always there. I have never been present at a death and not even too near. I would say this was lucky, and of course I'm grateful not to have a regular or close acquaintance with death, but I think it leaves in its place this uncertainty, even fear. We never really talked about death when anyone died--not about where they went (because as atheists, we believed that answer was "nowhere fast") or how we felt or what death entailed, beyond perhaps a recitation of Kubler-Ross's stages and the recognition that funerals were for the living. Even my childhood nightmares of dying were met quite practically with "you're not going to die tonight." Perhaps that is one of the reasons I'm exploring this now. So I was fascinated to read the very plain, not very morbid, descriptions of physical death--about changes in breathing (including the so-called "rattle"), how hearing is the last sense to go, how extremities lose heat, how skin becomes mottled. I also liked answering the probing, philosophical questions like, "Would you like to know when you are going to die?" Yes, I said. To know, so I can both prepare and quit thinking about it.
What is hope?
How would you define hope? I think of it as optimism for the future, looking forward to/towards something. I hadn't given much thought to hope as part of hospice, but that's because my definition of hope was narrow, i.e. a cure, more time. But it can also be hope for freedom from pain, hope for a serene or dignified death, hope for reconciliation or the fixing of regrets. As a hospice volunteer, we can try to help achieve those hopes and to provide comfort and companionship during that process.
Cultural Approaches to Death and Dying
One of my favorite handouts of training concerned the different cultural approaches to death and dying, from Buddhist and Hindu concerns about being mindful (often without medication) to Jewish and Muslim quick burial practices. Just this morning, I recalled a fascinating exhibit I'd seen at the MCNY, on burial practices of different cultures in NYC: the photographs/portraits of the deceased of Russian or Eastern European origin; the stones on the graves of the Jewish dead (famously shown at the end of
Schindler's List); the need for Chinese graves to face a certain way (I can't remember the specifics--Mama's ancestors are as close to the top of the mountain, but looking out from it, as they can be positioned in Thailand). We also talked a lot about death and dying in the U.S. and how it (interesting like pregnancy before it, though that has changed recently) has been shuffled off to hospitals and distanced from "normal" and ordinary life through medical intervention. This creates unfamiliarity, discomfort, and fear. Hospice hopes to allow people more comfortable, dignified, less frightening deaths through information and support. But, even now, people only routinely enter hospice 16 days before they die, though they can qualify approximately 6 months beforehand. Hospice is still seen as giving up hope and is often avoided. As I mentioned about hope, it's a different kind of hope. Because people are uncomfortable with death, they often avoid the dying and so patients can be isolated and alone (I saw this with just my own back injury, realizing of course, that people do have other things going on, but that isn't all it is). And so we hospice volunteers are surrogate friends (and might become, in a way, real friends)--sitting with, talking to, comforting, helping dying people.
Meet Them Where They Are
One of the catchphrases of training was "meet them where they are." This means if the patient and family do not want to acknowledge the process of dying or discuss death, we don't. Denial is normal and can be appropriate. We're just visiting, there to support them wherever they are. If they are angry, we listen. If they have questions, we try to answer and reassure them. But we don't proselytize for our own beliefs, though we can discuss them if asked. We can't fix things, obviously, except perhaps little things like fetching items, applying lotion, bringing music or flowers. Mainly, we listen.
Anticipatory Grief and Reactive Depression
There were several informative charts and lists of stages and theories; two of my favorite terms were anticipatory grief and reactive depression. Anticipatory grief is the sadness/anger/guilt you feel as the person grows ill, even before they die, but it is also what the patient feels during the dying process. Reactive depression is contrasted with clinical depression, in that it is based on a particular event and has limited duration. It is normal, as is anticipatory grief. The appropriateness of reactive depression is why
experts were upset that grief is being added to the new DSM V, defining it as an abnormal and therefore treatable condition.
Nearing Death Awareness
One of the books I've read in conjunction with my training (but not required by it) is
Final Gifts by Maggie Callanan and Patricia Kelley. These two hospice workers explore "nearing death awareness," or the ability of the dying person to recognize his or her condition as well as the similarities dying holds for many people, including communicating their needs for connection or closure, sometimes identifying the day or time of their deaths (often metaphorically, i.e. "I'm going to a party on Wednesday."), and/or seeing comforting visions often of deceased loved ones. It's a wonderful book for hospice volunteers, in that it outlines many of the different conversations or experiences we might have with patients. Recently, at church, we heard a
sermon on companioning the dying, or vigilling, and the sacredness of it. The speaker, Carol Rizzolo, recounted numerous literary accounts of dying, particular from
Gilgamesh and ancient Greece. She also mentions, without calling it "near death awareness," the visions people see close to their deaths.
Other Sources
I've read a few other books in the last few weeks, including Joan Didion's
Year of Magical Thinking, and Mitch Albom's
Tuesdays with Morrie and
Five People You Meet in Heaven. Of course, these aren't textbook theories on death and dying, but personal experiences, both non-fiction and fiction. Totally different personal experiences, from Didion's journalistic exploration of her reactions to her husband's shocking death during their daughter's own illness to Albom's emotional, spiritual, personal lessons from his dying professor. I liked Albom better, though Didion's writing is more literary, if only because her memoir is so much more personal and painful. I also read Leo Buscaglia's
The Fall of Freddie the Leaf, which I recall Gommie discussing years ago. The metaphor of the life of the leaf through the seasons is obvious but touching, though I was surprised that Freddie felt no anxiety or sadness when his friends fell off the tree. For kids, I like the animals of
Badger's Parting Gift, which includes both Badger's own experience of dying and the reactions of his friends.
I have several more books on my list--by Ira Byock, Roshi Joan Halifax, Judith Viorst, George Bonanno, even C.S. Lewis--and I'll let you know when I've read them. And if you have a favorite, please let me know (I know several of you took death and dying courses or bereavement training.)
Now that I've finished training, I'll shadow a chaplain or social worker on visits to patients and then start visiting on my own, probably once a week for as little as 15 minutes or up to an hour or so. HIPAA regulations will prevent me (and protect the patients) from sharing any but the most basic experiences (i.e. "my patient died today.") But I know I will be blogging about lessons learned eventually.
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UPDATE (February 22, 2017): I would add a resource, Hospice Net, that has lots of great information about hospice, but particularly
how to talk to children about death. Also, other good ones for kids include: For Heaven's Sake (about a grandson wondering where his grandfather has gone, ie. where is heaven?), and Water Bugs and Dragonflies (a different perspective on transition, death, and any kind of afterlife.)
For adults, I find both books by Maggie Callanhan--Final Journeys and Final Gifts--to be helpful. And those You Tube videos and books by T. Bathi, including Facing Your Fears: Straight Talk about the Dying Process (very hard to find sometimes.) If you need a different kind of way to explore these issues, see the cards My Gift of Grace (a card "game" for living and dying well. Finally, perhaps for future reference for discussing these issues with your loved ones, see Five Wishes, a series of forms recognized as legally binding in many states.
See also my post, "Hospice Help," an excerpt of which I include below to have all the advice in one spot.
. . . . here are my notes, with some alterations in order and a few additions, on death and dying for caregivers.
Signs to look for:
· Sleep is so important, sacred even at this time. Patients will sleep more, coming in and out of consciousness. Sometimes they see or hear things that no one else in the room does. These visions are often comforting.
· Eating: people’s bodies will not need much food at the end and patients lose their appetites. It can be so hard to allow someone we care about to stop eating—but encouraging or cajoling them into eating can actually hurt them physically (constipation, even feeding just a cancerous tumor), so not feeding them can be a gift.
· Drinking: Patients often don’t need a lot of liquid. Natural dehydration actually helps the body by eliminating excess fluid that the heart has trouble dealing with. Excess liquid can cause swelling in hands and feet and discomfort. Signs of natural dehydration include eyelids won’t close all the way and ear lobes begin to droop. Ice chips or wet swabs can help with dry lips, also lip balm. *It is important to note that patients don’t die because they aren’t fed or hydrated but because they are ill with something else; not eating and drinking is a symptom of dying, not its cause.
· Other signs:
o Breathing: can become labored (Cheyne-Stokes breathing, with lots of time between breaths)—but it doesn’t hurt the patient; natural chemicals released by body can reduce pain and panic. If there is some difficulty breathing, angle a fan at the side of patient’s face, which relaxes the facial muscles and helps ease breathing. Also, if you breathe slowly that helps the patient. Finally, so-called death rattle is loud and can bother listeners but again it doesn’t hurt or bother the patient.
o Hands and feet can become cold or even mottled (like purple bruises); looks disturbing but isn’t bothering patient. Often a sign that death is very near (days or even hours.)
o Lazarus Syndrome—an unexplainable surge of increased energy and interaction near the very end; death often follows within hours or a day.
What you can do:
o Talk, sing, pray—hearing is the last sense to go. Tell family stories. Say what you’ll remember most. Sometimes it helps to give patient permission to go. “I’ll love you, but I will be okay. You can go.” (See my post Hospice Poems and Songs)
o Take photos, cards, and signs to decorate their room and nightstand. This gives you and other visitors, even the hospice team, something to talk about besides health and the obvious. Photos especially are a nice jumping-off point for bringing up good memories and loved ones.
o Touch is important—brush hair, rub lotion, touch arms and hands, even crawl in bed—ill and elderly patients can be very isolated physically
o Question to ask yourself, “What’s the most important thing today?”
o Think of loved one’s energy as finite amount of money to spend each day, save it for what is most important—ill or elderly people’s pulse can be like that of a marathoner (normal is around 60 bpm; theirs can be 90-120+bpm; tire quickly, even just dressing)
o Remember to take care of yourself: eat, drink, sleep, get fresh air, take breaks. You help the patient more when you help yourself.
o Patients often have some control over the time of death—after a special date or visit, when everyone is nearby or when everyone is gone. If your loved one dies when you are not in the room, it was probably their choice, to make it easier on themselves and on you.
