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.
Approaching Death
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
(75) Anonymous, December 26, 2019 1:26 AM
I don't trust hospice
I read that the 4th leading cause of death is physician error; anyone in the hospital needs an advocate. My mother died of a broken hip. The hospice staff said she refused food, and I never found out how much effort they put into trying to get her to eat. I am firmly of the opinion that if staff believes the patient is dying, the patient will die. Ms. Berry is to be commended for standing firm and making informed, intelligent decisions.
(74) Anonymous, December 20, 2019 4:59 PM
Hospice Issues
My sister is a hospice social worker.
I think people are under the impression that hospice is a single organization. It isn't. The Hemlock Society of San Diego has hospice care. The Hemlock Society endorses active rather than passive intervention.
(73) Anonymous, December 16, 2019 5:06 AM
Say no to hospice
As a physician with many years experience in hospital medicine, I advise never putting a person on hospice. It will shorten their life.
(72) leah, December 9, 2019 5:25 PM
thank you for sharing
I watched this as my aunt was ill. They kept giving her morphine for pain. she was comatose. As I was visiting, she mad a noise as if she wanted to join in our conversation. We were told that this was her in pain. she was given one more dose of morphine and then was gone moments later. After that, I gave my children strict instructions that only they would decide when pain management was needed. They have seen me for many years in pain and they will know. I appreciate you telling your story.
(71) Anonymous, December 4, 2019 8:04 PM
Hooray for Backbones !
I'm so glad the daughter had the backbone to stand up to the hospice nurse and be a true advocate for her mother's care and transition. Sometimes, firmness and determination are absolute necessities when dealing with medical care professionals
(70) rachel shillingford, December 4, 2019 3:43 PM
beautiful
Thank you for sharing this beautiful story. You were there for your mother in the best most important way that you could have and she really died with beautiful dignity!
(69) Concerned US citizen, December 3, 2019 9:34 PM
Caution required for hospice
Some of the previous comments suggested that the author of this piece was overly concerned about her mother receiving an inappropriately high dose of morphine. The commenters implied that Ms. Berry should have trusted her mother’s nurse because Berry lacked the medical expertise to recognize inadequately treated pain. A 2014 series published in the Washington Post suggests that Berry’s concerns may not have been unfounded. https://www.washingtonpost.com/news/storyline/wp/2014/08/21/as-more-hospices-enroll-patients-who-arent-dying-questions-about-lethal-doses-arise/?noredirect=on. In addition, a recent US government report detailed hospice abuses. https://oig.hhs.gov/newsroom/media-materials/2019/hospice/. Hospice can do a lot of good, but family members should stay engaged and advocate for loved ones. Kudos to the author for bringing attention to this important issue.
(68) ross, December 3, 2019 4:14 PM
That wasn't my experience
When my mother had gotten an infection, I wasn't in charge, but rather my nonreligious sibling. I had no say. He always took care of her in the past. He spent hours relating to me what the doctors told him about her condition and how she should be put on hospice without food. She couldn't communicate and, in the end, she lasted eight days. It wasn't in any way a battle I could fight. Even a rav told me this. And so that's how it went. Am I responsible still? Depends on whom one asks.
(67) Nancy, December 3, 2019 12:38 PM
Re: The social worker you dealt with
I am a New York State licensed master level social worker, but I have never worked in a hospice. When I read about your experience with the hospice social worker, I cringed. It sounded like the social worker's responses came from one of my graduate school textbooks. I work in a completely different area, but the level of advocacy you displayed was extremely inspiring. If I did not work as a special needs consultant for children/young adults on the autism spectrum, I think I might have ended up working as a hospice social worker. Thank you for sharing such a personal and painful experience with me.
(66) Anonymous, September 18, 2019 10:45 PM
Abortions kill babies, and Hospice kill the elderly!
Hospice is the wolf in sheep's clothing! The last to make a penny off the dear sick ones, before the funeral homes get theirs!
Rachel, December 5, 2019 4:00 AM
This is not the Jewish view
While abortion on demand is not in accord with Torah, there are times when it may be necessary to save the mother's life. Consult a qualified rav.
The author clearly did not share your view. Hospice is appropriate in some cases. Consult a qualified rav. And as a member of Chevra Kadisha, we work as volunteers.
(65) Anonymous, October 2, 2017 6:11 PM
Another thing
Western medicine has some big drawbacks; their medicines cover up the symptoms, or what the body is saying. Morphine is one of the worst, not because it doesn't ease the pain, but because more is often supposedly better: $$$.
Ancient healing modalities using a higher way to deal with health, life and death, listens. I took care of my Mother and Father as they were dying and both asked for no medicine..they wanted consciousness. I of course, honored their wishes.
(64) Susannah Lewis, October 2, 2017 6:04 PM
Hospice Care is loving occasionally.
Hi, Your article here sounds familiar to me; I have worked as a CNA in Hospice care for over 25 years; in private homes, institutions aka "nursing" homes, and hospitals. As important as rules based on standard procedures can be, I agree with your strong stance you are telling us here. Many times have I stood close to a client laying in bed, getting ready to leave here, being peacefully present for them, and have someone else come in on the fast track, who want's the job done, and are not paying attention to the bigger spiritual picture if they even have one. That's not about religion, or a "brand" perspective, its about, as you say here, paying attention to your inner knowing. That space of loving, not technical "know how" as much. Life goes on forever and is a gift. People need to slow down and respectably breathe, and I'm sure your Mother appreciated that you know that.
(63) Anonymous, January 23, 2017 6:04 PM
Hospice care is all about money
My loved one was in a forum hospice care facility initially. First they no long allowed him to get out of bed and use the bathroom facilities saying that they didn't want him to fall. This weakened him further. They tried to over dose him on pain medication and kill him quickly. My sister figured this out. He almost died within 1 week of being in this facility. We moved him on Friday night, with a Rav's consent, to another facility where he lived for another 4 months.
They get paid per person, doesn't matter how long the person lives for. So this facility, with the frum doctors consent, overdose them and ship them out in body bags! It's a shanda!
(62) Nancy, January 22, 2017 3:47 PM
Dying with dignity and being free from pain
Isn't that what we ultimately want for everyone?
(61) Anonymous, January 22, 2017 3:06 PM
Similar experience and left feeling very guilty..
My father went into hospice a week before he died. It was a Jewish Hospice facility so I found comfort in that. But I was arguing with the doctor, social worker, manager, constantly. My father was so weak and frail, why go for the "big" drugs when a Tylenol would do? And it did. Let us not forget that the hospice facility is a business and what I was left feeling was that they did not individualize my father's care at all. It was the most intense week of my life and I can't get rid of the feeling that I should have been more assertive. My father was at peace in the end but it could have been handled in a much more sensitive individual way. No two patients are alike and need to be treated as such.
Nancy, December 11, 2019 12:39 PM
To commenter #61 Anonymous
You did the best you could with the tools at hand. Not everyone would have advocated for Tylenol over Morphine, but you did so successfully. I am so sorry that your father's care was not individualized by hospice personnel. However, IMO you have nothing to feel guilty about.
(60) Anonymous, December 10, 2015 3:56 AM
Hospice and Morphine Article
I wrote a long reply to your wonderful article, but can't send it since I will not do Facebook. I saved it though. Hospice and their Morphine took my precious Mother away from me when I finally, after months, gave in and gave her less than half of one dose for her pain - at her request. She became unresponsive, and we could no longer communicate for her last day on earth as her heart gave out. Maybe I can email you the rest of the story.
(59) Phillip, December 6, 2015 4:24 AM
Level of care
Sounds like hospice care should be the standard out patient level of service
(58) Anonymous, March 14, 2014 4:57 AM
Dying with dignity
Should we make the choices for our loved ones when it comes to death? I've always believed it should be their choice. God will not take anyone any faster or slower based upon our decisions. Someone should be able to make their own decisions on whether or not they receive narcotic care during the death process. If they cannot make their own decision, who does? I would think the family member who is the caregiver. This individual should have the best interest of the family member at heart.
(57) Anonymous, January 6, 2014 5:57 AM
I am a Hospice nurse. I love my patients and never want to see any of them suffer. Each person dies in their own way. Some need more pain killers than others. Some of the cancers can be very painful and each person fears death in a different way, this leads to different levels of anxiety. I don't know about the other Hospices but the drugs that we use are pediatric doses and rarely get too far past that point. That would equate to.....we don't kill them with the drugs, they die from the disease that is eating them up. Unfortunately, people that are not educated in the medical field feel that the timing is from the drugs. I'm sure that there are accidents out there that have happened, but it should be very rare and not be happening as the norm. I have gotten called the reaper, an angel of death, black death. It's immature. It isn't the law that you call and utilize Hospice. Keep your loved one in the hospital, they'll drug them too. The medical field does not like to let people suffer....but remember, if you have a DNR and you're in the hospital and you code, if the person that's in the room with you doesn't know that you're a DNR, you'll be intubated and on a respirator until they decide to disconnect. Have fun with that!
Anonymous, April 29, 2014 1:56 AM
Thank you for confirming what we already knew "Donna"
Anonymous, December 10, 2015 4:09 AM
You Say Have Fun With That?
We're talking death of our loved ones here, and your response, "Have fun with that!" doesn't give me a warm feeling about Hospice; yet, I'm not going to respond nor get into an argument on a site that should show more dignity . Also, my Mother did NOT have a DNR, and the hospital nurse even took it upon herself to take her off the IVs and oxygen as the machine still had not flatlined; yet, she said her heart stopped .... which I'll never understand, but did question all in administration.
(56) Anonymous, July 16, 2013 5:55 PM
Wish we would have done our research
My mom had COPD and CHF there was nothing they could do for her but she was still doing ok with her oxygen on 15. Her heart rate and blood pressure were good. Hospice suggest we give her dilaudid to ease her breathing. She was fine on Saturday, still talking to us, still had her since of humor, not in any distress. They gave her her first dose that night and by Tuesday afternoon she was gone. Had no idea she would go that fast. I thought we still had weeks with her not just days. Mom did go to Hospice to die. She knew she was dying we all did. Did not expect them to rush it with drugs. Feeling very guilty now! This is not at all what I had expected.
Anonymous, December 10, 2015 4:01 AM
I Feel Your Pain and Guilt
The same happened to me, and I lost my Mother's final day on earth as she became unresponsive due their Morphine I refused to give her, but she finally asked knowing it was here. I gave her less than half their dosage - one time only - and she was gone. I just wrote a long response regarding this, but it was over the allowed amount to write. Over a year later though, I sob as I write this.
(55) Anonymous, June 16, 2013 5:32 PM
hospice angel of death killed my moma with od senna.
i know my mother was just not going to die on the hospice 1 year or less time table. the rn consulted the pharmaciapia right in front of us and gave moma a massive dose of senacot, moma was noi even bound up or constipated. prayer and meditation wewe used to control pain and opiates and morphine dirivative drugs not used.a young hospice social worker named janene, caught the poisoning and marked the page in the book to show us how jean, the angel of death rn had usedthe od of senna to kill moma and her death occured in just a few hours, very painfully and frantic. of course hospice was covered and nothing done.death with no dignaty/murder by us government/law. we hate hospice and call it fed murder inc.
(54) Icare, September 29, 2012 7:34 AM
Hospice is truley the ghost of death!
This article is fact and all fact...ive seen this happen 3 times and didn't know until i came across these stories and now it all comes together!!! Hospice is legal murders.
(53) Anonymous, August 19, 2012 7:32 PM
Morphine and hospice
I have been a hospice nurse for ten years. I can say that I have never insisted that a patient 'must' have morphine. I instruct patients and families on the benefits and side effects and what to watch for in case of intolerance to the medication, as well as how to avoid giving 'too much'. I have always respected the decisions of families and patients to not give or receive any medication if they do not want it. I cannot speak for every hospice nurse, but I have never been trained or instructed to insist on morphine when it isn't truly needed for comfort. Morphine is a gift when used properly. Like all things, it can be misused.
(52) Anonymous, August 18, 2012 3:25 PM
Thanks - Great Insight
Thank you for the tremendous insight in this article! I too read this after I could have used it. My Mom passed this past week - died within 3 hours of taking liquid morphine. This was pushed not only the Hospice but also by two of my siblings - despite my Mother's stated intentions to pass away free of narcotics and against explicit instructions by the medical POA against administering morphine without his approval. Your comments about the desire to get it over with rang true and it's just a testament to how selfish and narcissistic other family members can be.
Lori, January 11, 2013 2:51 AM
It happened to me too
My Mom died within 12 hours of being given morphine and Ativan by hospice. She had CHF and COPD and those two medications are contraindicated for a person with COPD. I did not know that Roxanol was another name for morphine. I gave my mom the dose of this med when hospice told me to. I was exhausted, alone, stressed, and in pain (I am 100% disabled). Still, there is NO excuse for not educating myself. I had simply come to trust them as Mom had been on hospice for 3 years. Still, NO excuse. When I called them in a panic in the wee hours of the morning because Mom was having a very hard time breathing, the on-call nurse told me to increase the dose. I refused, telling her it looked like she was getting worse with this med. The on-call yelled at me and told me it was my job to keep Mom calm and keep her from falling and breaking a hip thereby dying a very painful death in a hospital. Mom kept trying to get up. So I gave her another dose. It was my job to know and question everything hospice was prescribing for her. I failed to do this. Mom paid with her life. I pay with the life-long guilt. It is killing me. I'm so, so sorry, Mom. I failed you terribly when you needed me the most.
Tina, January 29, 2013 3:10 AM
Lori, I know how you feel
Lori--Please don't be so hard on yourself. You did the best you could in a very difficult situation. I understand the tendency to take on the responsibility and guilt for everything that happens when a parent dies, because I did the same thing to myself when my father died. But we're not perfect, we can only do the best we can. I hope you can come to understand that more, get some peace (and some sleep) and realize, in good time, that it's OK for you to be happy again. Your mother would want that, I'm sure. God bless.
Alicia, September 2, 2013 1:49 AM
We do what we know
You didn't know, you did the best you could. Your mother knows in her soul you did. Release the pain of your loss. My dads on hospice now, after 4 hospitals, 7 doctors, we learned so much, but ultimately he will die from his injuries knowing we fought for him and your mom knows that too.
(51) Tracy J. Hicks, July 16, 2012 7:39 AM
I Appreciate You
I happened to come across this site when I was searching for a next door neighbor's ten yr old son fell off his bicycle injuring his leg , was taken to the hospital , was given Morphine and horribly DIED from the dosage here in New Brunswick, NJ hospital July 13th,2012. This information you have provided wholeheartedly about your mother has me thinking ahead with our mother and her beginning mid stage Alzheimers. I cannot thank you enough on teaching us your findings.
(50) Anonymous, February 2, 2012 5:23 AM
cautionary
Thank you so much for writing this article. Sadly, I've read it too late. Grandma went from sitting up and talking one day to laying in bed medicated so heavily she never woke up. She was starved & dehydrated for 8 days...all because she had difficulty swallowing one pill, one day. There are inject able pain meds but someone suggested morphine under the tongue right off the bat. Grandma's children were not good advocates but they've taught me some valuable lessons. Death was hastened by ignorance, perhaps gullibility and it is unfortunate. I am now left with feelings of anger and guilt but none of the decisions were up to me. I pray for peace in my soul and my only relief is that she is no longer suffering. Your story gives me hope and information that I can pass on to others as well as use myself when the time comes.
(49) Joane B Gallant, July 2, 2011 7:54 AM
Hospice
Very Beautifully written ~ Thankful you were able to be there for your Mother. God Bless you.
(48) Anonymous, July 27, 2010 5:30 PM
Many thanks!
Many thanks & be blessed! I am so grateful that your G'D has helped you to do what is correct - and HE even didn't let the morphine work when you had the feeling "no" but said "yes" because of the answer of your rabbi and your effort and wish to please G'D - be blessed abundantly! Shalom. Dorit
(47) Anonymous, July 22, 2010 8:03 PM
hospice care has helped many
i can only speak from the experiences of seeing ffriends pass at home and in a hospice, the care the patients recieved was praised ,by the families, in all cases. not one felt they were forced to abide by a decision that went against religious (all Jewish in t hese cases) beliefs..CCalvary Hospice used sensitivity in each case.
(46) , July 22, 2010 2:29 PM
The loss for you was immense but you handled everything so well and in a very determined way to give your mother the peaceful death with comfort of the Shema. She died with dignity and you did everything that you could. Hashem is well pleased with you because you honored your mother who, through your life, had honored you as her daughter. May you have peace with the yarhzeits that you light each year based on the many facts that you protected your mother from the coldness and impersonal efforts of the staff. At least they finally listened to you and that was a blessing.
(45) sahrah pock, July 22, 2010 12:25 PM
Caring and righteous energy :C.A.R.E
The "caring industry" has a lot to learn. There is a great difference between the level of comfort of the staff to the level of comfort for the patient. Thank G-d, Hashem has taught us who's needs come first.
(44) Linda, July 21, 2010 2:38 AM
Let G-d decide
The Almighty G-d will decide when it is time , not Hospice. My mother was recommended for Hospice and I refused and she lived for another year. I thank G-d everyday that I did not allow man to decide her fate.
(43) Carol, July 21, 2010 2:20 AM
I, too, have just lost my mother, and can empathize with what you've just gone through. My mother was on hospice, but my experience was somewhat different from yours. My mother had terminal cancer and COPD, was generally alert and oriented, was not in pain, but needed morphine when her breathing became labored. I was hesitant at first to use the morphine, but researched its use in making breathing easier, and discussed it with the hospice nurse. We agreed that I would use it (and I used the smallest dose) only when my mother said she needed it. I used it intermittently at first, then, as time went on, she needed it on a more regular basis, especially at night and in the early morning. It helped her greatly, except on the last day of her life, when she struggled to breathe, despite an increase in the morphine and the use of anti-anxiety medication. I feel that the issue of morphine is a sensitive one. Before my mother was on hospice, I knew only that morphine relieved pain, and was a respiratory depressant, and I worried about giving her too much and hastening her death. No doubt, hospice nurses have another perspective from longer experience with morphine than mine. However, I didn't feel that my mother's hospice nurse "pushed" me to use it. Also, the nurse did provide lemon glycerin swabs, once my mother was unable to swallow, she preferred the feel of a cold spoon dipped in ice water to the swabs, so we didn't use them. I'm sorry that you feel that the hospice nurse wanted to see your mother's passing take place as quickly as possible, once it was certain that her end was near. On the other hand, I concur with you that it's of the utmost importance for the family to be as educated as possible about what to expect from hospice, and always, with issues of health care, to be an advocate for the patient. I'm glad that your mother died with dignity, and that you felt a sense of closure and peace. May G-d bless you and bring you comfort.
(42) anon, July 20, 2010 11:12 PM
interesting
First, Im sorry about your loss. My you find comfort and peace. Second, I understand that you were unhappy with some aspects of the hospice experience. I wanted to point out that the hospice nurse has been trained to recognize subtle signs of pain that a lay family member likely would not be able to recognize. For example, labored or fast breathing. Also, many studies have shown that morphine does not hasten death. So as a well trained nurse she probably was incorporating her research knowledge as well as her many previous experiences with dying patients. Therefore, she recommended more morphine.
(41) Anonymous, July 20, 2010 9:44 PM
The Buyer Beware
As a hospice MD I have come to understand that the reason hospice is not on the side of the family and patient (or physician or medical professional for that matter) is because hospice is not an independent agency to serve the needs of their clients, but just another insurance company. This is the case regardless if it jewish one or run by any other organization. Those who pay the bills (mostly Medicare) make the rules.
(40) Anonymous, July 20, 2010 9:30 PM
Nearly killed with kindness
My father was in hospice after all the doctors and social workers recommended it for him. After a week without food, we (the kids) were called from around the world to say good-bye. When the rav came, he asked, "Are you ready to 'go home'? Have you had enough of this world?" My father answered "No. I want to live." The only thing to do was to remove him from hospice and take him to the emergency room. After hours without food, he finally got a room. All four of his children arrived by then. His dementia 'lifted' and we all had clear, loving conversations. After a week, he went home with hospice care coming to the house. My mother and sister cared for him for his last three weeks. What was the value of those last weeks? One example: My mother leaned forward to kiss him good-night. As she came closer, their eyes locked. A sly smile spread across his lips and he raised a finger, drawing it along side her cheeck. It was so intimate, I said, "If you're going to do that, I am leaving the room!" We all had priceless moments with him then. I am so happy he could tell us he wanted to live -even for a few weeks- because that was not in the hospice plan. I agree that their intentions are good, but their ways are not our ways and we have to have the input of a rav along the way.
(39) Jolie Greiff, July 20, 2010 6:39 PM
condolences
Dear Galia, I am so sorry to learn that your mom z'l passed away. She was one special lady. I imagine her talking over old times with my mom z'l now. HaMakom y'nachem etchem btoch sha'ar avlei tzion v'yerushalyim. Jolie (Greiff)
(38) Anonymous, July 20, 2010 3:06 PM
So pleased you have shared this with everyone. Unfortunately, my famliy had a similar experience when my father was in intensive care and the doctors kept saying they wanted to make him as comfortable as possible, while at the same time telling us they have decided not to give him anti-biotics should he need it! Thank G-d we were a strong family and were aware from the outset that the doctors have their own hidden agendas. Thank G-d we have where to turn for advice when a close one is critically ill. Just knowing that we followed the Jewish medical ethics and not those of the doctors is a great source of comfort. How fortunate we are to be Jewish and to value what true life is all about!!!!!!!! Thanks
(37) Anonymous, July 20, 2010 3:48 AM
im glad u got to say shema with your mother right before she died. i will never forget learning that in school-how thats so important. I hope after 120, ill have the same zechut.kol hakavod!
(36) Joanne, July 20, 2010 3:27 AM
Thank you for sharing your experience.
I learned so much from your story. My mother is almost 89 yo and in very frail health. You were very strong and brave and championed your mother to the last. Yasher coacha. I pray I will be so if and when the time comes. Baruch dayan haemet.
(35) Anonymous, July 20, 2010 3:08 AM
bless you for your courage
May G-d cmfort you for your loss. Thank you so much for sharing your story. I am greatly informed and strengthened from your story, as i a sure countless others are. It is very difficult to stand up to professionals and you have given me strength.
(34) Anonymous, July 20, 2010 2:21 AM
I'm saddened that you were unhappy with your hospice experience, but I am more saddened that you chose to use such a highly revered website to spread your feelings without the benefit of actual medical data. It has been proven time and again that glycerin swabs are more uncomfortable, that morphine does not hasten death and actually in some studies, lengthens life, and that hydration via feeding tube or IV is more harmful to a loved one. Dying is a natual process, one that Hashem created along with life. While we should not hasten it, the end of life can be as meaningful to family and friends as the beginning of life. When a dying loved one is comfortable in her breathing, body, and mind , family and friends can truly feel her neshama in the room. It's not about the loved ones, though; it's about the patient, the mother, the friend.
(33) harriet, July 19, 2010 10:34 PM
This article only makes me more confused about the decision to place my mother in Hospice care. I lost her only 7 months ago she had alzheimers, kidney failure and contracted pnemonia after about a week in the hosp on IV antibiotics her white cell count was still going up. She had become septic. Social services and the Dr's suggested we put her in hospice care We were told that all though they couldn't give us a time limit she had less than 6 months. She was 83. The 2nd night there she fell out of bed they called us to tell us she fell but was not hurt. When we got to the nursing facility she did not look good , but ate her entire breakest. That day she was in and out of it. I saw the far away look in her eye's when they were open. Her last words to me were I love you, before she closed her eyes. I went home to light my shabbot candles and on my way back to her 2 hours later I got the phone call that she had just passed. I struggle with my decision If I did the right thing or should I have kept her in the hosp? 2 day's in hospice and she was gone Such a heart wrenching decision I miss her so.
(32) Alan S., July 19, 2010 9:57 PM
Don't be too quick to judge...
I am a doctor, and also a son whose father passed away in hospice care. My mother also had in-hospital hospice care at the end of her life. In both situations, morphine was used to decrease the pain and, in my mothers situation, to ease her labored breathing. I did not try to "show up" the nurses and people tending to my parents, even though there were (very few, thank goodness) instances where I knew more than they did. My attitude was to make sure no harm was being done, and that my parents desires and rights were being respected. Now, I understand that this may not be your attitude, and this is certainly your right. Can hospice programs that are for-profit institutions, and are driven more by marketing decisions rather than respect for human life, can these places make suspect decisions? Of course, However, I caution you not to judge with the finest comb every decision that is made. Like any field of practice, (whether people are professionals, para-professionals, or lay people), sometimes people perform better than others and sometimes they perform worse. There is always a human element involved, regardless of pain algorithms or the textbook definitions of treatment or standards of care. While a child must advocate for their loved one, I would caution you not to pick apart every decision The human element always comes into play, and and a bit of leeway must be given to people that handle these situations every day. While everyone should take great pride in their work, no one is perfect all the time.
(31) Bill Simpson, July 19, 2010 9:41 PM
Understanding Hospice hard for the overly emotional family.
As a retired Hospital Chaplain, I sent this piece out to several friends in the medical field and I received this reply from one of the sharpest, caring nurses I with whom I ever worked, as I asked the question: "Who is being treated here, the dying mother, or the grieving son? Here is her reply: I'd have to say that the son with some unresolved guilt issues was the one being treated in this case. You've been in hospitals enough to know that oxygen doesn't keep people, especially people with a dry mouth, comfortable, it actually makes you less comfortable. It's good for someone who is conscious of having trouble breathing & makes them feel a little better, but it offered no comfort to this dying woman. Tylenol is more likely to hasten death than morphine. Tylenol is very harsh on the liver and kidneys, especially in the elderly and ill. Denying her morphine while she has agonal respirations is torture & I suspect the nurse at the bedside told him so, but he didn't include that in his essay. A moist washcloth is all that is needed to do oral care, so I don't understand the dissertation about the lemon glycerin swabs. My older brother pulled the "look at me I'm a great Christian because I'm yelling at my sister about removing my dying mother's IV that's keeping her alive" routine causing a scene at the hospital. It was a lovely scene at the nurses' station if you can imagine. This author is pulling his own variant of "look at me I'm a great Jew because I call my Rabbi & have him talk to the nurses who are trying to kill my mother." He should have just taken care of her himself & given her tylenol & left hospice out of it. Hospice is pure nursing & is nursing driven. I would love to work in hospice if I could just take care of the dying without dealing with their guilt ridden families.
(30) Yehudis, July 19, 2010 9:07 PM
I'm impressed
You did a wonderful job caring for your mother. I am impressed by how you handled the situations that came up and did what you knew to be best despite the nurse's opposition.
(29) Akiva Feinstein, July 19, 2010 7:36 PM
Challenge in seeking absolute criteria in hospice
I am a rabbi in a Jewish Hospice program in Beachwood, OH (NCJW/ Montefiore Hospice). This piece nicely summarized some of the great assets of hospice as well as some of the challenges inherent in hospice care. One of the themes that this brings up is that while Torah and Halacha are eternal truths, unchanged from Mt. Sinai, their application in today's world can be complex. There are times when hospice clearly is not advisable in halacha, but there are times when it can be of great assistance in allowing a person to live out their last days. The Rabbi and family have to decide based on not only Jewish law, but using a medical, and "personal/ intuitive" sense of where the patient is at in the disease process. What exactly is the right thing to do here? We are not prophets- we do not know when and how often times the disease process has advanced and if hospitalization or hospice is the right answer. I think that this piece showed that as human beings, we have great help from Jewish law, from medical experts, but still this area of life does not always provide black and white options and one has to put trust in their rabbis, Jewish law, and their own intuitions. Also, hospice should not be telling what the patient has to do. Rather, Hospice care is guided by the patient's own community physician, and is guided by the hospice medical director and nurses and clergy. If you are being forced to do something against your view, you can sign out of hospice any time. Hospice varies a lot- some are more business, most are less. Some work more with your religious views, some don't. That's life.
(28) Elana, July 19, 2010 4:54 PM
Imagine this
I am a nurse and although I don't work in hospice care, I know what patients go thru when they are in pain and are unable to communicate it. Hydration and nutrition at death's doorway? People are not thinking about food at this stage...they are not hungry or thirsty...they are miserable bec they are dying and it is painful. Imagine drowning...you can't take a deep breath of air because you know your time is up and you have to go. And there it is...someone's throwing you food and water. Have you ever had insomnia? You stare up at the ceiling and all you want to do is sleep but it is not coming...can you imagine someone offering you food and drink when all you want to do is sleep! What I have found while working in the hospital, is that it is the family members who selfishly want to hold on to their loved ones. I would too, if I did not have this first hand experience. Maybe even now I would want to hold on...we are an emotional species, after all. But, imagine poor Terry Schiavo, if still a thinking human being, being trapped in a body, unable to do a single thing or move by herself, even an inch. I would have begged someone to shoot me. Try it yourself sometime...see if you are able to stay still in your bed and not move, even for 24 hrs. This is the very reason it is so impt to have your own health care proxy and a living will. So your wishes can be followed when the time comes to be "born" to a different state of existance.
(27) Anonymous, July 19, 2010 4:33 PM
I read your comments with my heart breaking. Currently my wife of 30 years is in hospice, but she is in a Jewish hospice. As difficult as this, the support of the Jewish community has been a blessing. From kosher food to kosher guidance have all helped. And while this time of half living / half grieving is very hard, the staff nurses, doctors, aids and all the rest are compassionate and understanding. All I can say to anyone potentially facing this situation (G-d forbid), having your loved one in a Jewish hospice can elp hmake an unbearable situation a bit more tolerable.
(26) Anonymous, July 19, 2010 3:12 PM
interesting and sad
As a Hospice rabbi, I would like to begin by offering my deepest sorrows about your mother's passing. It sounds as if her end was not as peaceful as you had hoped for. Regarding the hospice care, my feeling is that the issue can be divided into two parts. 1. Was the hospice sensitive to your needs? 2. Is hospice compatible with Jewish medical ethics? The answer to # 1 is partially. The nurse heard you but still had an agenda to follow. This is unfortunately something that does occur on occassion, usually do to routinization of care. I also want to highlight that I agree with the commenter who asked about the medical director. A nurse can recommend treatment, but it is the dr. who needs to sign on to it. I do think the hospice tried to accomodate the religious needs as they did consult with the family's rabbi at the family's request. The answer to question # 2 is yes, hospice is compatible to Jewish medical ethics. This is not the place to go into specifics, but end of life care in halacha is much more varied than simply saying we must continue everything. Issues of pain and suffering do play a role. Of course, we cannot answer whether our loved one is suffering or in pain because only a person knows what personal suffering is. We would only be conjecturing by saying, 'he's seems like he is suffering.' Sometimes, the dying are more peaceful than those being left behind. Furthermore, other areas of treatment are also not cut and dry as well. Therefore, I caution readers of this piece to hear the challenges the author went through while also recognizing that one bad case does not undermine the whole system.
(25) anonymous, July 19, 2010 12:05 PM
IMO a racket
I hate to be the one who tells you this, yet someone close to me works as a nurse in a nursing home. She has worked with hospice for decades and she and the other nurses would roll their eyes, so to speak at all of the "balogne" that hospice would do. They were trained to do little more than to try and force patients by way of their family to take morphine which quickens death. She said she and the other nurses felt helpless. One time there was a family whose mother was elderly and had mild dementia. She has suffered a fall and broke her leg. She said she was not in pain and and the nurses who knew this patient and believed she was not in pain. The hospice workers kept insisting that she be forced to go on morphine at these rediculosly high amounts. The family listened to the nurses. The hospice kept insisting that she NEEDS morphine. Well, guess what, the lady did NOT go on morphine and she was soon removed from the hospice area and went on living...... Look, everyone can choose what they want and should not be forced to take morphine which speeds up death. It should not be forced down their throats with false " empathy". The other thing is that the nurses at this nursing home know that it's racket and they hear the meetings going on that hospice also has to stay within theirbudget just like any other business and morphine speeds up death....another free bed anyone?
(24) Anonymous, July 19, 2010 2:28 AM
Your experience and your pain with Hospice saddened me as I read. I am sorry for your loss and further still for what transpired for you. My lovely Mother passed away six months ago from cancer, and our experience with her Hospice care is one that we cherish. They provided oxygen and lemon-glycerin swabs without our even realizing these things were needed, and she had additional morphine, at our request when the dosage prescribed was not managing her pain. Hopsice was respectful to us and to her throughout her care in her Kosher home, and patient with us as we explained what we needed per Jewish law. As difficult as it was for me to read your story and to share my own during this first year of mourning, I do so because I believe your experience was not the norm and want others to know this. May HaShem ease your pain and your suffering.
(23) Deborah LItwack, July 19, 2010 2:11 AM
My secular friend's hospice
Married to a non-Jew, my dear childhood friend suffered for 13 years with ovarian then breast then bone and brain mets. She ended up ina secular Hospice. There was a "rabbi" there. It became all to obvious in my brief questions to the nursing staff attending her, that they were NOT feeding or hydrating her. Pain meds were given through a capped IV. There was nothing I could do, not being "family" and the family not being there. She was gone that night.
(22) Diane, July 18, 2010 10:44 PM
Hospice
My father lived for nearly 2 years in 'hospice care' but it was really the care that my mother gave him and her faith in Hashem that gave her the strength to care for him that helped him live that long. We entered hospice with only a couple of months given to him. We firmly believe that Hospice pushes the morphine in order to hasten death, 'comfort' is what thery call it. The provided us regularly with 'comfort packages' filled with super strong morphine and bottles of the stuff. Ony a few times when my father was in pain did he take it, even when the nurses said he should be given the meds 4 times a day and even tried to convince my father it was best for him. To a man with colon cancer and a colostomy bag, that is akin to death in a few days because one of the side effects of morphine is severe constipation. The aftercare is pretty useless. I am thankful, however, that hospice empowered my mother and our family to remove my father from the hospital and quickly settle in at home. We got two whole years, in which time he got to meet his grandson and even get to hold him. Thank you for sharing your story. It means a lot. I have not been able to speak about it.
(21) eileen dewalt, July 18, 2010 10:34 PM
Hospice horrible for me
Thank you so much for your aritcle. I am not Jewish but love the Jews and aish.com. My experience with hospice was terrible . My Mother choose a hospice facilty at the time of her death. Once she was addmitted they started morphine. At the same time we in Florida were getting ready for a approaching hurricane. My son is a rescue worker and had to report for duty and would be at the station for several hours if not days . He was on his way to see his grandmother one more time. I asked the nurse to please hold on the morphine until after my mothers visit with her grandson . The nurse looked at me and said "You enjoy watching your mother suffer." This was a very hard thing to deal with. Mother was also in an evacuation zone so the family was asked to leave . She passed before we were able to see her again. The one comfort we did have is my Mother passed durning hurricane Frances which was my father midddle name and she was buried on 9/11 2005 my father was also a NY fireman , So we were very comforted that she was home with God.
(20) Gabriela Kaplan, July 18, 2010 9:23 PM
A Point of Information
Please accept my condolences on your loss, and my admiration for your courage in doing the "right " thing for you and your family. However, lemon-glycerin swabs are no longer used because they only aggravate and enhance the mouth dryness. A sponge toothette would have been more physiologically correct and comfortable.
(19) Anonymous, July 18, 2010 8:44 PM
Resigned my hospice nurse posiion after only a few months...
was not what I had thought it would, should, could be..and this was a "not for profit" agency...it became a numbers game...they pay salaries so they can work you to death...the other workers were wonderful, but administration was a piece of work..not a whole lot of empathy for employees....incredibly disorganized company even though they had been "in business" for several decades...there was some "ambulance chasing" after Medicare declared a one million dollar shortfall - very aggressive marketing to see which agency could sign the patient up first after the MD had made the referral...and high employee turnover rates...love the concept of hospice though......
(18) Brenda Chambers, July 18, 2010 7:37 PM
Where was the hospice MEDICAL DIRECTOR?
Where was the hospice medical director during your mother's illness and ultimate death. Many (not all) hospice medical directors (especially those that work directly for the hospice) are quite trained in pain management. The lowest possible pain method should have been prescribed first. It's called a Pain Assessment Algorithm. As far as medical equipment (reference to oxygen) there should have been a standard onsite oxygen availability from the beginning. The titration of morphine may have been inappropriate. Remember that not all hospice staff members are well trained and can differ from location to location. I regret that you had to "suggest" treatment protocols rather than being to trust the experience of the hospice staff and their medical directort. You were an important part of your mother's dying experience. I hope that other hospice professionals read your story and learn from it. Brenda Chambers Past President of the Texas/New Mexico Hospice Organization.
(17) Anonymous, July 18, 2010 7:30 PM
I didn't know
When my sister was dying in the hospital from cancer, she was on a morphine pump. We were told to give her this when she appeared in pain. My Mother was so afraid of her being in pain that every time she moved we gave a shot. I deeply regret that she was not able to rouse from this drug induced state so we could say our goodbyes. It was after her death that I realized that we basically had killed her with the pump. I DEEPLY, DEEPLY AM SO SORROWFUL THAT I DID NOT KNOW BETTER.
(16) Leo, July 18, 2010 7:25 PM
End of life: personal opinion
I have a terminal cancer, debilitating and causing a lot of pain. I'm in early 60s, not at 6 month life expentancy level yet, but will be there soon. I was laughing at niceties and subtleties of hospice care when I read this article. I respect rabbi's opinion, but I would not ask for anybody's advice. For me it's very clear and simple: the sooner the end comes the better.
(15) martha, July 18, 2010 7:19 PM
loving farewell
Congratulations on having the strength to insist on respectful, minimally invasive care. I have a (non-religious) friend who was convinced by her mother's doctor that her "quality of life" was too low to "force her to continue living". The solution? Increasing intravenous dosage of morphine until her rather strong heart finally shut down. This was supposedly the "merciful" approach.
(14) Anonymous, July 18, 2010 6:18 PM
Beautiful
Thank you so much for writing this and sharing your story with us. This is such an important topic, many people don't know much about Jewish medical ethics. People think they're doing right by their relatives when they want them to pass away as quickly and painlessly as possible, but a rabbi should always be consulted about the individual case. Very important message that people should understand. I really appreciated reading about how you handled your mother's death, and how you dealt with a nurse who certainly meant well but did not necessarily support Jewish medical ethics. A very difficult experience. Very informative and beautiful article. I now have a better understanding of how hospice works, which is very important for me as these issues have come up with my grandfather in the past. Thank you again and G-d bless.
(13) Rephael, July 18, 2010 6:06 PM
It is crucial that we understand that the goals and proceures of hospice care are not always compatible with Halacha. If you are considering hospice care for a loved one, be certain to have a rabbi who is very well versed in end of life medical issues to consult with. My father's last seven months were spent with home based hospice care. The nurses were wonderful people but they frequently suggested discontinuing this or that medication because "your father wouldn't want to live like this". Had we not called our rav before any of these decisions were made, he surely would have died sooner. Decisions of this type are always heart wrenching. My sisters and I have the comfort of knowing that they were made according to the dictates of the Torah. Just as all questions of life are guided by our compassionate Torah, so are end of life issues. May Hashem spare us from these very difficult issues, but when confronted by them give us the wisdom to seek proper guidance.
(12) Ann, July 18, 2010 5:50 PM
Thank you for providing much needed information concerning our dying loved-ones. This article is not only educational but also draws us to prayer, trusting that our God will guide us in watching over the needs and comforts of those who are close to death.
(11) Bruce Birnberg, July 18, 2010 4:51 PM
Next time choose a JEWISH HOSPICE
Dear Ms. Berry, I have the privalege of running Stein Hospice, a Jewish hospice program. I suspect your experience is one of receiving substandard care...hospice should not be as you described...and certainly not a Jewish hospice. The hospice movement come in response to modern hospital-based deaths that border on the horrific. The tools of modern medicine can do a ton of good, but can also do harm. Did you know, for instance, that [all things being equal] patients on hospice live longer than people who are not? The current literature is clear on that. This is probably so, because the iatrogenic effects of aggressive medical treatment hasten death! The shandeh is that while seeking a cure for our loved ones, we have oft times been delivering the polar opposite. I am so sorry that your beloved mother received care unworthy of a fine hospice. But, having received poor care, please do not come to the conclusion that yours was a normative hospice experience. G*d forbid. A halachic hospice experience is both possible and full of mercy. Sincerely, Bruce Birnberg Stein Hospice Somerset, New Jersey 732-227-1212
(10) Devorah, July 18, 2010 4:48 PM
Thank you for sharing
We had a similar experience with hospice in the care for my mother-in-law in our home. We sometimes disagreed with hospice's recommendations, and we were free to follow and honor what we believed would be the patient's desires and best interests, although if we took the patient to the hospital, we were told the hospice services were automatically terminated and would need re-started following discharge. It was convenient to have the hospice nurse provide monitoring and avoid difficult trips to see a doctor for any prescriptions. Hospice seemed to have the goal of a speedy painless death once the patient is in the hospice program, and our goal was an extended painless lifetime. The times of conflict were not easy to manage as the family tends to rely on the advice of the hospice. We wish that hospice had provided more support with getting ready for the funeral arrangements, by encouragement to pre-plan and to provide us with preliminary early signs of an impending death in advance. Everything happened at a slow-warp speed in the end days, and we were not as prepared as we might have been.
(9) Anonymous, July 18, 2010 4:35 PM
Hospice has two "sides"
I am a physician that has treated hospice patients for many years. I am board certified in hospice care. Fifteen years or so ago, I was very much a proponent of hospice for select cases. However, over the past few years, hospice has been very aggressive in marketing and some organizations appear not to have the patient's needs first. I am very cautious in referring a patient and do so only when it is in their best interest. However, I have been faced more and more with families that have been approached by hospice before talking to a medical professional and they are not appropriate candidates.As, a physician,I am also called upon by hospice organizations to "refer" as many patients that I find appropriate, I am given literature and guidelines to "help" me find referrals. I urge all families to talk to a physician before talking to a hospice organization. Your life may be at stake.
(8) goodstein, July 18, 2010 4:26 PM
Be Careful of Judging
Having known many Hospice professionals, I feel that I can safely say that the nurse who advocated the use of morphine was not trying to hasten death. Hospice NEVER hastens death. Morphine does NOT hasten anyone's death. In addition to providing pain relief it also eases breathing difficulties at the end stage of life. That is why most likely staff did not recommend oxygen. As far as your mother's high pain tolerance it was good that you were there to advocate for her, but please be aware that the VAST majority of patients require far more than this and that Hospice will provide dilaudid or whatever is ncessary to ease suffering. That they did not have the glycerin swabs is rather surprising. These are standard practice for virtually all hospices. Sounds more like normal human error than anything else. Sorry that happened. You should know the standard in hospice care is to record the family's perception at time of death. From the perception of the Hospice movement this was successful. However, your comments do reflect a common thread that is present with minorities and hospice care. There is a lack of trust. African Americans and other groups also often fight hospice staff over percieved slights and percieved attempts to "hasten" the end of life. The overriding goal of hospice is to allow the natural process of death to occur. Some people really don't believe this when they sign on and hard feelings can result. But kudos to you for the care that you showed your Mother in the final weeks of her life. By your care and with the help of the dedicated hospice workers, your mother achieved something very few in our society experience- a death with dignity.
(7) miriam, July 18, 2010 4:21 PM
well done. thank you for your honesty
Hi Galia, I appreciated your honesty in your well written and touching article. I work with patients in hospice, and it is very helpful for us to understand every nuance of your perspective. I think that cultural awareness and sensitivity is essential at all times. Good for you for doing what you felt was best for your mom at all times. May your mom's soul have an aliyah and may this article enlighten and educated others.
(6) SYLVIA DAVIS, July 18, 2010 4:17 PM
hOSPICE
i HAD HOSPICE FOR MY HUSBAND. THEY ARE THE WORST. ALL THEY WANT TO DO PUSH NORPHINE. I BLAME MYSELF .I STILL CAN'T GET OVER
(5) Steve Goldstein, July 18, 2010 3:51 PM
This article is very important. My uncle died a few weeks ago -- because the hospice "mercifully" denied him food and water, until he expired. Is starving your loved one to death considered merciful??
(4) Shoshana, July 18, 2010 3:12 PM
Well-written piece on such a difficult and important life issue
Thank you for this important and necessary article. One never likes to think or deal with such matters ahead of time but dealing with them at the appropriate time - as you did - can, I see, relieve much heartache, guilt and possibility of making incorrect and regretful decisions later. My father is in a home, not a hospice. The workers are absolutely wonderfully patient and caring etc but there are times where we may be able to suggest or implement a better line of action to show just a little more care and respect for the patient. This respect I'm sure can be often recognised by the patient to some degree or other and thereby improve the quality of their most difficult life situations - however much time left they may have. This seems as an all emcompassing mitzvah of bikur cholim, kibud Av V'Eim etc etc on behalf of the patient but also for ourselves; doing the absolute best that we can within our own possibility and not just accepting what we're told. We have to be true to ourselves. It is well-know that doctors, nurses and social workers can make mistakes sometimes or misjudged situations or be tired or upset some days - they are only human, and we have to be vigilant and alert at all times to make sure that we know and understand and agree/disagree with a certain course of action. May there by an aliyas neshama for Ita Malka bas Yosef in the zechus of sharing this information. Thanks again.
(3) papamel, July 18, 2010 2:05 PM
the worlds of the 85's& 90 yr olds are not the same as those of the 60's 70's plus---death is for the living--that is why the dying's life is prolonged as much as possible--from our side it is better and more merciful to let nature do its job without interference
(2) Anonymous, July 18, 2010 12:45 PM
Thank you very much
Thank you very much for telling your story. I know we will be facing many of these issues soon, have already had the DNR discussion. Just knowing that tylenol or less morphine may work is useful. Being reminded that we may need to stand up to the medical people is important.
(1) Ilana, July 18, 2010 11:23 AM
Thank you
Thank you for this article. It was both informative and touching.