In an e-mail exchange published in The New York Times, Joyce Carol Oates and Meghan O’Rourke spoke about how they coped with the loss of loved ones, a husband in Oates’s case and a mother’s in O’Rourke’s. Both said they turned to writing as a bereavement ritual, because more public forms of grieving felt impersonal, even intrusive.
No doubt many Americans feel this way because we are a society in which individual autonomy, for both liberals and conservatives, is prized, quite often at the expense of tradition. Hence, “ritual,” which to many smacks of some kind of external religious authoritarianism, is to be avoided at all cost.
So what does one do in a secular society in an effort at relieving pain and suffering associated with death? Some seek out (not surprisingly) individual therapists while others, under the auspices of hospice grief counseling, turn to bereavement groups. But whether going to a therapist’s office on a regular basis or to a bereavement group once a week, these mourners are themselves participating in some form of ritual.
Starkly put, as human beings in mourning, we generally cannot do right by our grief without doing some rite of mourning that is shared in the presence of others. Traditional religious communities at their best provide just such a presence, with practices of consolation developed over centuries, if not millennia.
We’ve all heard the old saying: “Time heals all wounds.” But as anyone who has been involved with hospice grief counseling – or who has been a griever knows – that’s simply not true.
Plainly, there are some wounds that time never heals such as that caused by the death of a child when, for a parent, the order of the universe is reversed. Alternatively, the universe can come to an abrupt stop when a spouse to whom one has been married half a century dies – even if the death follows a long period of coping with terminal illness. The gash to the heart of the surviving spouse may likewise never heal. In either case, we do well to use the word “heart-broken.”
Indeed, less traumatic losses may never completely “heal.” As long as we can conjure up memories of loved ones, particularly good memories, there’s an altogether likely chance that they will arise commingled with pain as well as joy. More and more empirical evidence shows that there are no systematic “stages of grief” to pass through in some linear fashion but rather waves of grief that may wash over us when we least expect them.
Caring for the dying is hard enough; caring for their survivors can be harder still. The worst thing we can say to someone who has suffered a death – especially when that someone is oneself – is: “It’s time to heal and move on.” The complex relationships between spirituality and illness and between spirituality and death demand more than that kind of platitude.
As many of you know, my book, Raising Spirits: Stories of Suffering and Comfort at Death’s Door, recounts my experiences as a hospital and hospice chaplain helping people coping with terminal illness, even as I myself struggled to make sense of the connections between spirituality and death. After all the time I had spent on the project, first in my chaplaincy work and then in writing the book and finding a publisher for it, I remember my exhilaration when I at last finished it.
But that feeling was short-lived. That selfsame day, I learned of the death of the rabbi who had meant so much to me at a crucial moment in my life.
My father struggled for many years with mental illness. In my senior year at college, some 700 miles away from where my family lived, I got a phone call. It was the rabbi. “You need to come home. Your father has hurt himself.”
“Is he dead?” I asked.
“Just come home,” the rabbi answered.
I caught the first flight back.
No one met me at the airport – except the rabbi. He was the one who told me my told me my father had died. More important, he was the one who tried to comfort me at the end of my father’s life.
Over the decades since then, the rabbi and I spoke by phone several times. A few months before his death, he told me he doubted he had made a difference in anybody’s life. He was wrong. He surely did in mine.
My recollections of Raising Spirits may well fade, but my remembrances of what my rabbi did to support my spirit will never dim. May everyone find such people and moments of comfort in their own lives.
In caring for the dying, I’ve often been confronted with the question, “How much longer do I have?” My response? Just as nobody knows the exact moment we’re going to enter this world, nobody knows the precise instant we’re going to leave it, either.
Despite such end of life counseling, I’ve frequently encountered patients who, while still physically capable of venturing out from time to time, have nevertheless retreated into bed, lowered the shade in the room, and simply waited for death to come and take them.
In an effort to provide support for patients such as these – people typically overcome by the sort of depression accompanied with serious disease – I’ve asked them to talk about the kinds of activities that gave them pleasure before they got sick. Some have talked about attending baseball games, some about seeing movies, some about going shopping. (I’ve written about just such episodes in my book, Raising Spirits: Stories of Suffering and Comfort at Death’s Door.) After listening to what my patients had to say, I’ve encouraged them to go out, when possible, and engage in such activities again while they still have the physical wherewithal to do so.
One recurring choice I’ve found among patients has surprised – and delighted – me more than any other. Rather than choosing a trip to the mountains or the ocean for one last time, some people have answered that they would like to go to Vegas. I never asked them about their reasoning. Maybe they imagine that taking in a show or even experiencing the thrill of gambling might make them feel full of life again. Or, in my imagination, they might be thinking, “So what if I loose at the tables? What are they going to do? Kill me?”
Although I don’t know what lay behind these patients’ choice, I do know two things for certain. First, my hospice team did everything possible to fulfill its patients’ wishes, sending them off with the necessary medical supplies and contacts for the journey. But second, and as important, because none of us knows the exact moment our lives might end, we each need to make sure we put in some moment every day that can lift our spirits and give us a reason to go on.
Recently, in the Q&A following a health care lecture I had given on spirituality and illness, someone asked, “Don’t you think that there are good nursing homes where the residents are happy?” I looked at the 100 people sitting in the audience and inquired, “How many of you sitting here now want to die in a nursing home?” Not a single hand went up.
Dealing with one’s own terminal illness at home is likely hard enough; caring for a terminally ill family member in our home may be equally hard, both emotionally and financially. But in a skilled nursing facility (SNF), coping with terminal illness and providing support for terminally ill loved ones become harder still.
Whatever euphemisms a SNF may use – including the word “home” instead of “facility” – end of life comfort can be in short supply among the facility’s personnel who may well be understaffed and under-trained to furnish adequate care to the gravely-ill. Even when hospice is involved, the actual administration of medication is usually left to the SNF staff who may not give it in a timely way to furnish the kind of pain relief so necessary to many seriously ill patients. And even if the “med cart” does come by on time, how much time do such dying “residents” spend languishing in their beds by themselves?
Yes, there may be some “good” nursing homes, that, e.g., have smaller number of residents or that have smaller number of annual “dings” from state certification agencies. But if possible, the best home in which to get excellent end of life treatment is one’s own home or the home of a loved one, encircled by the best caregivers money can’t buy – one’s family and one’s friends.
A beloved relative of a friend of ours died recently. As our friend sat day after day in the ICU waiting room, well-meaning people would come up and ask, “How are you doing?” Although our friend didn’t say anything, he thought to himself, “How the hell do you think I’m doing? Somebody I love is dying! My heart is breaking.”
Hospice chaplains, and their counterparts in hospitals, know that frequently the best thing to do before speaking is to keep silent and wait to hear what the terminally ill, their families, and their friends have to say – and only then to answer accordingly.
In the end, though, giving support for terminally ill patients and their families is best shown not by our words but by our presence – by the very fact that in the face of sickness, pain, and suffering we come to be with them nonetheless.
Due to the attention that my book, Raising Spirits: Stories of Suffering and Comfort at Death’s Door, has received through word of mouth, my health care lectures around the country, and national media, Amazon and my publisher made the work available on Kindle yesterday. My great hope is that the book will help its readers be better able at coping with terminal illness by viewing end of life comfort, not only from a physical perspective, but from a spiritual one as well.
Click to to read the column written by my son, Matthew, Managing Editor of Collider.com, for The Washington Post on the documentary How to Die in Oregon and the issue of so-called “physician-assisted suicide”.
Click here to read my Washington Post “Guest Voices” column on healthcare and confidentiality.
Click here to read my editorial in The Washington Post‘s “Guest Voices” about how those who don’t believe in God approach their own mortality.