For the past three years, I have worked as a hospice chaplain. Medicaid requires that hospice care includes attending to issues of the soul, along with the comfort of the corporeal. I imagine that the seed of this requirement comes from religious end of life needs, whether it is Catholic last rites, or l’havdil, the Jewish ritual of confession (vidui) but it has developed into a deeper kind of spiritual care.
Hospice chaplains talk to patients about their lives and families, their regrets and successes, their fears and their anger. Chaplains will utilize prayer, presence, song and guided imagery. Most of all we bring listening hearts for patients and their families.
Initially, my role was to meet new patients and families, conduct a spiritual assessment and devise a spiritual care plan which I then implemented. With time, my role expanded to include introductory tours for prospective patients, intake sign-ons, prayers at time of death and bereavement follow-up conversations. You hear a lot of interesting stories and observe varied family dynamics, but some of the most bothersome comments I have heard are from people who have never had a relative in hospice, never read a book about end-of-life issues and never stepped foot inside a hospice.
“You know, they kill you in hospice.”
“They give you morphine, which kills you.”
“They give you too much medicine so you die faster.”
“They won’t feed you.”
“If you sign the required DNR (do not resuscitate) you become DNT (do not treat) and the staff stops caring and attending to your needs.”
“Halakhah doesn’t allow you to go to hospice.”
“You always have to do everything. always. Everything.”
While it is true that most people on a hospice service die while on the hospice service, they die of terminal conditions, be they cardiac, cancer, renal disease, etc. and hospice care is how they are cared for at this time.
The biblical death scenes of Isaac, Jacob, and David come to life in my imagination as hospice scenes. An elder recognizes that his body is changing; his eyes and teeth don’t work as well as they used to. Hair turns grey, skin starts to sag, and tasks like getting up out of a chair take effort, possibly more effort with each passing month. “It is time to tell my loved ones goodbye,” he thinks to himself. The loved and even not-so-loved family members gather, and the elder begins to review the highlights of his life, the lessons he has learned and the wealth he has accrued. In quiet conversation with each person, he tells them of his hopes and dreams for them and blesses them.
Death may not be immediate. Just because the text says: “And it came to pass that so and so died,” there may well have been a month or a year until death actually occurred. What may have happened during this gap in the text? What did these holy people do in between those gathering scenes and their deaths? I imagine walks in the desert or the halls of a palace, at first long walks, and with time passing the route gets shorter and shorter, closer and closer to home, and then only within the tent, until most of the day is spent in recline and the “walk” is two paces to the chamber pot.
People bring gifts of food, figs freshly picked and still warm from the sun, pita bread baked on a stone and dipped in new olive oil, wine carried in a leather pouch cooled by depths of the earth. Possibly daily or weekly a group gathers to eat with the elder. The grandchildren play just outside and the elder delights in the whooping and hollering. And then one day the noise starts to annoy him, and the bread brings on fits of coughing. The elder is more ornery than pleasant, and the visitors shorten their visits. There is confusion, since, for an hour or two, the elder is more like the man who walked leisurely and then will let out a grunt and begin to scream at everyone. He asks for food and then vomits when it appears and is satisfied from sucking on an orange and taking a few sips of water. There are herbs and teas that help him relax and fall asleep, and for a week or two, he sleeps more than he is awake.
Family sits vigil at his bedside, singing the songs of childhood, reminiscing about adventures and arguments. With each breath, a rattling noise is heard. It frightens the gathered family, yet doesn’t seem to bother the elder. Over the next few days, the elder sleeps and doesn’t respond when he is spoken to. His breathing becomes slower and slower. He still groans from time to time, and those round him continue to use the comfort measures of the time. And then one day, the time between each breath lengthens, until the rise and fall of his chest stops.
With a few modern updates, I witnessed this scene many times over. I also witnessed patients who were discharged from hospice to home. Upon arrival they were at death’s door. As nurses and aides carefully cleaned and comforted the patient, fed him whatever he wanted to eat, shaved men’s faces, braided women’s hair, and, most importantly, managed symptoms of pain or gasping for air, they monitored the patient constantly using knowledge and experience to guide the patient on whichever path they were on. Once pain is managed, the patient may be able to converse. Physical therapy is called in to teach the person, or their family how to transfer from bed to chair. And they go home. Some live comfortably at home with care services provided and die days, weeks, or months later. Some return to the hospice unit for symptom management if the family does not feel equipped to administer pain medications and is frightened to witness the natural death process without a medical professional nearby.
“Yes, I am wise, but it’s wisdom born of pain” sang Helen Reddy in the 1970s. Unfortunately, I understand the sentiment. I have opinions and wisdom about death and dying due to experiencing it up close several times, aside from work. Here are some truths: 1) We are all going to die. 2) Similar to other body experiences, there are predictable patterns to death, of course with exceptions (see “How We Die” by Dr. Sherwin Nuland). 3) Movie and TV death scenes are not representative of actual death. Neither are scenes of CPR.
And here is some advice. Start the conversation with your loved ones. Sign a living will (both Agudah and the RCA have halakhic versions). Assign a health care proxy. While it is true and correct that God is the decisor of when our souls and bodies separate, and it is important that when end-of-life decisions have to be made by humans, it requires consulting halakha, it is also true that personal wishes are often part of the halakhic considerations. If you are in a coma, you cannot respond to a halakhic decisor’s question of whether you want to be resuscitated or prefer AND (allow natural death) to CPR (cardiopulmonary resuscitation) and LST (life-saving treatment). Do you want to be intubated, have a tracheotomy, put on a ventilator? If you are in a coma, do you want to continue dialysis?
Our community needs to educate itself, not only about the wishes of loved ones, but also about the reality of hospice care. At this time, the terms “palliative care” and “hospice care” are not uniformly defined in every facility. In some facilities, they are exactly the same thing; in others, palliative care is an addition to curative procedures and hospice is for those people who have stopped life-saving treatments. Ask the medical professionals to define what they mean in a particular place.
Most hospices strongly advise that fluids and food should be stopped when a person is actively dying, but most will continue to feed patients if that is the family’s wishes, as long as it is not causing the patient harm and or pain.
I pen this in the hopes of opening conversations. Death is inevitable and painful grieving usually follows. Knowing that we have helped our loved one move to the olam ha’emet, the world of truth, can be life-affirming.