When my mother, who had Alzheimers disease, kidney failure and terminal cancer, entered an obvious state of decline, her doctor recommended that we consider hospice care. Hospice care’s guiding principle is to ensure the patient be kept as comfortable and pain-free as possible with few or no invasive medical procedures, while providing support to family and caregivers. While their goal is not to artificially extend life, theoretically it is not to hasten death, either. They deem to be respectful of a family’s and patient’s wishes regarding end-of-life care.
According to Medicare guidelines, to qualify for hospice care one must thought to be within the last six months of one’s life. Recommendations and referrals for enrollment in hospice can come from your physician, a social worker, or from a facility such as a nursing home or assisted living facility. If one should live longer than six months, it does not mean that one does not qualify or will be “rejected” from the program; one’s enrollment in hospice care can be and usually is extended.
Hospice care is provided at the facility of your choice: in your home, a nursing home or assisted living, or in a dedicated hospice inpatient facility.
My mother was evaluated by a hospice nurse and social worker; we received several helpful pamphlets about hospice care and the various stages of the end of life, and a schedule of visitation by hospice caregivers was established. Particular hospice workers were assigned so that they could develop a relationship with my mother, her caregivers, and our family, so that, in their words, “we can go on this journey together.” Just as expectant women file a “birth plan” with their doctors in anticipation of the delivery of their newborns, we discussed a “plan” for the end of life for my mother in terms of how her care would be managed and administered in its final stages. Ultimately, we are not in control. Life and death are in God's hands.
Your role as caregiver is to educate yourself so you can be your loved ones’ best possible advocate.
Although it is unpleasant to consider the myriad of possibilities and scenarios, your role and duty as caregiver is to educate yourself as much as possible so that you can be your loved ones’ best possible advocate when they can no longer advocate for themselves. Many medical decisions are unfortunately based on subjective evidence, open to interpretation. One must be in contact with one’s rabbi, because when you are dealing with the topic of medical ethics, there are procedures that may be in conflict with Jewish Law. Be sure to have access to your rabbi’s emergency “hotline” when complications require that sudden decisions must be made. Your rabbi will likely be communicating with your physician and hospice caregiver.
It's important to know that it is always possible to alter your decisions as the need arises. Nothing is set in stone, even if you’ve put something in writing, although a change in your contingency plans may require a doctor’s signature. The sooner you consider these things, while your loved one is in more stable condition and you are of rational mind, the easier it will be to deal with when the situation becomes dire and you may not have the luxury of time and research to consider your options.
It’s a good idea to understand the medical, religious and ethical implications of DNR (Do Not Resuscitate), DNI (Do Not Intubate), and DNT (Do Not Transport), which are all directives that your hospice caregiver will want to discuss with you. As horrible as these may sound, these measures may be appropriate for your loved one but must be evaluated on a case-by-case and moment-by-moment basis. Knowledge is power! If you are faced with these terrible decisions, you do not want to make them when you are weak and vulnerable. Thankfully, there are no decisions I made throughout my mother’s final months that left me feeling guilty or bad. I am at peace with myself that my mother had excellent care throughout and that the difficult decisions we made were correct. This is a huge comfort to me.
The Last Month
The notorious case of Terry Schiavo, a brain-damaged woman disconnected from life support and essentially starved to death on court orders, haunted me and I did not want that scenario for my mother. Yet I learned that not everyone is a candidate for a feeding tube, or even hydration. As the cancer overcame my mother, it became impossible for my mother to eat or digest food. She was not well enough to survive a surgical procedure nor could she have physically handled a feeding tube. She was completely without energy, but was able to communicate with us that she did not feel hunger nor serious pain. She was able to drink from a straw and while water alone is ultimately unable to sustain a person long-term, it was able to keep her going for many weeks.
My mother, who was in her late 80’s, was blessed with an extremely high tolerance for pain, but eventually she did require pain relief. The hospice nurse recommended we begin with small regular doses of morphine.
I objected. While I did not want her to suffer, was there any reason we couldn’t first try Tylenol? The hospice nurse explained to me that I should not worry, that the initial dosing of morphine was very low and would only make her more comfortable.
Ultimately, the hospice nurse’s job is to respect the wishes of the patient’s family.
Ultimately, the hospice nurse’s job is to respect the wishes of the patient’s family, so only Tylenol was given. Just as I had thought, my mom responded well to this, and we were able to successfully control her pain for several weeks in this way. Only when that no longer did the trick did I feel comfortable in agreeing to morphine, and it was ordered at the hospice nurse’s direction to be given four times a day.
The next day I got a frantic call from my mother’s excellent private-duty nurse. “The morphine is really knocking your mom out. She’s in such a deep sleep, that I can’t rouse her enough to get her to drink. If she continues like this, she will dehydrate.”
The importance of advocacy cannot be understated! I immediately called the hospice nurse to apprise her of the situation, and told her to please cut her morphine back to twice a day. Reluctantly but respectfully, she did so. The improvement in my mother was immediate. It was clear she was pain-free but she could still drink water regularly and remain hydrated.
The last month of her life, my mother’s Alzheimers seemed to lessen and her lucidity increased. This was a true gift from God, as she was able to acknowledge us and express her gratitude for the care we had given her. She also told one of her caregivers that she knew she was dying and was not afraid, and that she was happy with her life.
Hospice’s response to my questions via telephone was instantaneous, day or night. And when a wheel chair and hospital bed were required, I didn’t have to worry about delivery, set-up, or dealing with insurance; the equipment was brought almost immediately. Hospice also offered the services of a social worker for our entire family.
But on the rare occasions I did have serious questions, the social worker’s responses felt artificial and scripted and didn’t really bring comfort or help. I did not blame the hospice program for this – I thought it was great that they had social workers available – it was just my bad luck I was assigned someone I couldn’t relate to and I could have requested someone else. Hospice also provides grief counseling for a full 13 months after a loved ones’ passing for the entire family, completely free of charge.
The terrible day came when my mother could no longer swallow, and within minutes of this she became a “goses” – someone on her deathbed. When the hour came for my mother’s usual dose of morphine, I hesitated. At this point she was clearly not in pain, her blood pressure was only 60/40 and we thought her end would be within a day at most. The hospice nurse was upset with me and tried to convince me that my mother needed the morphine to ensure her last hours would be comfortable. I called our rabbi’s emergency number and asked him to speak with the hospice nurse. She assured him that the morphine would not hasten her death but only keep her comfortable. They went back and forth, with the rabbi insisting on the nurse’s pledge that this would not hasten her death.
“Ultimately,” he told me, “we can only hope that they are being truthful, and since we must give them the benefit of the doubt, we then have to respect medical advice if there is no conflict with Jewish law.” My mother was given her usual dose of morphine, but it seemed to have no effect for better or for worse.
My mother was breathing through her mouth. It occurred to me that the ensuing dryness must be very uncomfortable, but because she couldn’t swallow I could not give her water. I asked the hospice nurse for some lemon-glycerin swabs (these look like little saturated sponges on a stick, almost like a lollypop) to moisten the inside of her mouth. I was shocked by her response when she told me, “Oh, we don’t carry those.” This, from a nurse whose constant refrain had been, “Our goal is to keep your mother comfortable.” How could she not have this most basic and inexpensive tool?
Frantic, I called someone I knew who works at a local hospital. He brought the swabs, which provided obvious relief. My mother’s heart rate was now only 22 beats per minute. He suggested that giving her supplemental oxygen would be an additional comfort measure so her breathing would be less labored. In my ignorance I hadn’t realized that oxygen was an option. “Oh, I can order that for you,” was the hospice nurse’s lackadaisical response to me, “and I want to increase her morphine to every four hours.”
“No more morphine!” I responded. “That will slow her heart further and kill her!”
If her concern was my mother’s comfort, why did I have to take the initiative to request oxygen?
The hospice nurse became defensive. “We want your mother’s end to be peaceful. We are only trying to ensure her comfort,” she insisted, politely and calmly.
How ironic. If her concern was my mother’s comfort, why did I have to take the initiative to request oxygen? Why didn’t she care that my mother’s mouth was dry and that discomfort could easily be relieved through something as simple as swabs, which she could not or would not provide? Why was her only answer “morphine?”
“I will respect your wishes,” she continued, looking me hard in the eye, “but if you are asking my professional opinion…”
She was intimidating but fortunately, God gave me strength at this difficult time. “Let’s just wait and see,” I replied calmly. “But no morphine,” I repeated, with steely but polite reserve.
Suddenly my mother opened her eyes for the first time in three weeks and looked at me intensely. “Mom, I am right here,” I said to her, consciously controlling my tears and forcing myself to remain calm. “I am with you; you are not alone. We love you.” I then said Shema Yisrael slowly and clearly to her, concentrating on every word. When I got to the last word, she closed her eyes and took a final gentle breath.
It sounds odd, but my mother’s passing was a beautiful experience. She died with dignity and without suffering. It brought me closure and peace. I felt privileged that I was able to be there for her, and I felt the depth and importance of this special mitzvah. And I was comforted by the thought that she died when God decreed her time had truly come, not tortured by the guilt that would have ensued had I followed the hospice nurse’s recommendations.
In retrospect, I believe that the hospice nurse did want the best for my mother, but her definition of what was “best” was in conflict with ours, personally and religiously. Once my mother’s end became apparent, the hospice nurse’s ideal was to get it over with as quickly and painlessly as possible. It is really no different than anything else in our modern world today: we are in a hurry about everything, be it death or birth. When left to their own devices, birth and death take time and patience, two qualities we are sorely lacking today.
Ultimately, hospice care provides valuable services to those in need, but with caveats. I honestly do not know if the disparate philosophy behind the hospice nurse’s end-of-life recommendations were the whim of one individual or the particular organization she represented. Thankfully, I was there for my mother and was able to advocate for her, so that she was able to leave this life when God decreed her time was complete. I had to force myself to remain strong, and not be vulnerable at a time when one is not only vulnerable, but also weak. I could not have done so without prayer, the support of my family and rabbi, nor without previously educating myself about what the myriad choices entailed.
This article is written for the aliyas neshama of Ita Malka bas Yosef