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Just one small coment on hospice rushing a patient's death. Sometimes a patient will just die before the intake nurse even has the paperwork signed.
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My 90yo mother underwent euthanasia by hospice and died last night. She did not have cancer or any other terminal diagnosis, but the nursing home suggested hospice since they could provide some help and spiritual support in the next year, and since I felt that real medical interventions weren't right any longer. What I got was a hospice nurse who defined comfort as a heavy level of sedation approaching general anesthesia, all while saying "she is comfortable" which meant not moving, not eating or drinking due to the sedation, and not breathing adequately due to the morphine. It was a heavier level of sedation than I would use in an ER to reduce a dislocated shoulder. All the while, staff around her saying "it is good that she is comfortable". Hospice does have literally permission to kill with meds, as there can never be any autopsy or claim of wrongful death. You would have to have hatchet marks all over the body to get anyone to consider that maybe something wrong actually did happen. Those who support it believe in euthanasia. Be careful of your agency if sign up. My blood curdles over what happened, I know what happened because I am a doctor who understand these meds and understands medical sedation. I know that when an O2sat is 74 with normal lung exam and no respiratory diagnosis, she is underbreathing from meds and suffering the injuries of intentional hypoxia. She did not have pain and never used narcotics before this began. The morphine ativan in the cheek killed her. This was fine with my sister who at last came to visit and supervised making sure she was "asleep" 24/7 for the 12 days it took to do Mom in. She kept saying "its her time to go". I know it was 2 weeks of slow euthanasia, I find it immoral. But she is dead now. What I think is that lethal levels of sedation are beyond therapeutic levels, and that there should be somewhat more oversight on the free-reign the hospice nurses have. I am not talking about letting people in pain suffer. That is different.
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Kathy I offer my condolences for your loss and will not argue with your observations because you are an MD and I am only an RN.
Why did you allow this to happen with your knowledge of medication?
As you know nurses are only allowed to administer what is prescribed it should have been possible for you to question the Dr doing the ordering
I realize that you are hurting and angry at the way your mother died and feel the blame should be laid somewhere.
Hospice can not admit a patient without a terminal diagnosis.
You certainly can request a private autopsy. Not usual in hospice but I personally have arranged one for a family which of course they had to pay for.
I absolutely agree that unessassary high levels of sedation are unacceptable but as you know what may be reasonable for someone younger may be too much for the very elderly
When your initial grief has subsided I hope you will be able to think about this more clearly and if you still feel it to be a wrongful death make sure those responsible are properly identified.
I repeat what I have said many times before "Hospice nurses are not licensed to kill" Again please accept my sincere condolences
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My deepest sympathies on the loss of your mother, Kathy. I have the same question that Veronica has. You say your mother had 2 weeks of slow euthanasia. You are an MD. Why did you let this happen? I don't understand.
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Kathy, something is not right. I am truly sorry for your loss, but if she had no terminal diagnosis, how did she get into hospice? Even though you are a physician, they apparently gave you no say in her medication plan, and that certainly was not right either.

That said, I had a patient with brain injury who was "euthanized" in this way against what we all wanted as rehab people, and I know it is very hard not to come across as too pushy and demanding with your fellow professionals, and yet you end up regretting not being more forceful when you turn out to have been right about something.
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All stories are complicated. My sister arrived after not seeing her for two years. I asked for hospice because I thought she would get some added services and that she would die within one year. I had visited her a week earlier for 5 days and was accepting of this, wanting meds discontinued. The first hospice refused her because she did not have a terminal diagnosis. Another agency took her when her doctor stretched and used "failure to thrive". I called so many times saying "euthanasia is not acceptable", but my sister wanted her to "be comfortable". A transdermal for nausea increased to benadryl/ativan/phenergan and haldol so she would not wake up at all. I because frantic and made many phone calls. The only answer was always "she appears comfortable". I finanally used my legal guardianship to order discontinuation of morphine and ativan. It was of course too late by then. I feel that I participated in killing her, wrongly. My sister and the staff of hospice would evaluate that differently, and say they did a good job of keeping her comfortable. Even unto death. But I still think death by medications is still murder. Sometimes an admission to hospice can be fudged on the terminal diagnosis. In this case, the people who arrived behaved like a death squad, and were shocked when I started raging about how euthanasia in this setting is not Catholic. It was over once it began with hospice. My sister who often said "if I had her for a week she would be dead" and "If it was up to me it would have been over a long time ago" is not a person I could harness or control Thats what happened. I am not proud. It was wrong. She died of dehydration, starvation, and hypoxia. Nothing else. Caused by meds.
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Kathy please allow yourself to grieve your mother's death. She was comfortable at least that is positive and had had a good long life try and hang onto that. My feelings after your explanation is that the blame should be laid at the feet of the Dr who ordered the medications. That cocktail of sedatives of different variety is totally inappropriate in someone who is not in pain or severely agitated. There is not excuse for that. The only thing they seem to have left out is Seroquil, which I personally do not like. Clearly you have a very stressful job as an ER physician and must get very tired. Apparently you were not consulted about the medications being prescribed. I can not comment on whether the hospice team was like a death squad as I was not there but the principles of the drugs given would appear to have been excessive. Hang onto the fact that you did not order the drugs and did everything you could to control the situation from a distance. Your sister is the one who should be on her knees in confession not you. Other professionals rearely appreciate what they see as another professional sticking their oar in.
My husband is also an MD and saved my life several times when I was close to death by questioning the treatment I was or not getting in a hospital A good example was being asked to sign a DNR on my way into surgery for a burst appendix. I politely declined and was then asked "Well how much do you want us to do." I was then told I would probably wake up intubated and have to keep the tube in for a couple of days. Some people are so insensitive it bogles the mind. Forgive yourself you did the best you could. Blessings.
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Dr. Kathy,
My condolences on your mother's passing. As a hospice (crisis care) nurse in the patient's home, I know that there are criteria that have to be met (set by the government) in order to sign up with hospice. Your mom was in a nursing home, so I'm assuming there was some deficit where she needed more care than she or you could provide. You say the nursing home suggested hospice to "provide some help (what type of help?) and spiritual support in the next year". Were you looking for the diapers, Chux, and other items that are a free service? Your family is Catholic, so I'm not sure why spiritual support from hospice would be needed. A parish priest or deacon are usually able to visit the sick at a moments notice.
What "real medical interventions" weren't working....what was her condition?
Was your mom eating and drinking well before hospice?
I'm sorry, I have to correct you when you say "hospice does have literally permission to kill with meds." Most hospices have "standard orders" that cover most conditions (nausea, temperature, pain, agitation, etc.) The meds are given after assessing the patient's signs and symptoms.

All hospices explain the entire enrollment procedure and operating procedures. Were you in attendance? You always have the right for input or denying any meds you don't want for her. Were you supervising her meds during those 2 weeks?
Your mother was very advanced in age and was well within the age range to pass away.
It seems your sister was either realistic that your mom would be passing soon or actually wanted her gone. Even if that was the case, there would have been no way a nurse could "kill" your mother. There seems to be gaps in the story.
I hope you can come to grips at a later date that your mother didn't suffer and probably would have passed within a couple of years with no interventions. Given your bias, please don't recommend hospice to any of your patients. At least we, the nurses, won't be deemed "murderers", when we relieve any pain or anxiety we observe.
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Yes, mother would have passed within a couple of years. She passed instead in 14 days!! One factor where I didn't get a grip was that it happened so quickly I didn't catch on or stop the train wreck. Another factor was that it was a Medicare hospice from Minneapolis with a young nurse. Where I live in Sun Valley Idaho we have an all volunteer well-funded hospice. It has the highest reputation for careful care and dignity rather than the hastening of the passing in a life deemed not worth living any more. I have ordered the forensic toxicology labs for the meds she had in her and go from there. I can pay privately for this. This will show to what extent the meds caused vs contributed to her death. Neither hasten nor delay the death would be a more ethical motto for treatment. There should also be guidelines for the level of sedation administered compared to the condition of the body being treated. A body riddled with painful mets is not the condition my mother had. Did the hospice think that when they were contacted we wanted euthanasia? Was I supposed to know that? One could put a person into general anesthesia and argue that they are relieving the pain and anxiety they observe. Its not hard to kill a person with such heavy sedation for two weeks because there was almost no oral intake and there is hypoxia all along. Just because one specific dose did not do it, does not mean that it was not virtually 100% the meds which killed her.
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When mom was entered into hospice, they explained what was expected. Even gave us a pamphlet. Don't call 911. Don't call ambulance. Don't take her to the ER. Call them and they will be with us.... In the end, when mom's feet and hand were turning black, dad called 911 and took mom to the ER. That's how easy it was to get out of hospice.
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Bookluvr,
The option of cancelling hospice is (or should be) completely explained when you sign up. To sign up with hospice, the patient is agreeing that they do not want any interventions in the dying process. IF the patient and family doesn't agree with that, then hospice won't sign you on. You are "allowed" to go to the hospital for comfort measures (for example, the patient fell and broke their leg. That is painful. They can go to the hospital to set/cast it, etc.). That is not considered "prolonging" life.
Hospice is for patients that are considered terminal and will die within 6 months.
I was a private duty nurse for a patient in his home (NOT hospice). He was 92, extremely weak and emaciated, chronic diarrhea and had a few other non life threatening illnesses. He wanted to die. He did not want any intervention. He signed onto hospice. When he fainted on the commode, I had to call paramedics to help me get him up. THEY took him to the hospital due to his blood pressure bottoming out. (Obviously, at that time, he couldn't speak for himself.) He was discharged from hospice because they took him to the hospital for "life-saving treatment ". When he came home, he was readmitted to hospice.
You can cancel hospice anytime and for any reason. I can only speak from my nursing experience working with one hospice company in Southern California but I can't imagine that all the others operate much differently.
In the end stage of dying, the circulation slows/shuts down, affecting the extremities first,(lower legs and hands), often turning them a crimson or purple color. They are cold to touch due to lack of blood flow. The process is called mottling. Occasionally, with light mottling, simply repositioning or massaging the extremities will bring back the normal skin color or lessen the appearance of darkness. With severe mottling, it does not resolve and death will be following soon after.
Was the hospital able to reverse the black color and restore circulation to your mom's legs and hand?
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Kathy1951. you say your mother had "a Medicare hospice from Minneapolis with a young nurse." All hospice is paid for by Medicare (at for people who are on Medicare. I don't know how pediatric hospice is handled). So it isn't a case of some hospice accepting Medicare and others not.

I think that most hospice organizations use some volunteers. The nurses and doctors and social workers and chaplain are paid, but there are other roles that are staffed by volunteers. For my mother the volunteers just spent time with her, talking about her interests, doing her nails, etc. For my husband I passed on the volunteer because I had a PCA and thought the volunteers should be used with caregivers who had no help. I can't imagine why any hospice program would be all volunteer, when there is insurance money (Medicare) to pay for most of the program. Are you sure the hospice in Idaho was all-volunteer? If so, why?

Both of my hospice experiences were in the Twin Cities and they were excellent. Which is not to say all TC hospice programs are excellent, but I know that some are! I have a young friend who provides musical experiences to hospice clients. She plays instruments and/or sings. She is not a volunteer. This is what she does for a living.

I am really very glad that you will review the forensic toxicology labs. That should either set you mind at ease, or give you the basis for further action. If this Minneapolis hospice program acted as you suspect they did, that needs to come to light and changes made.

BTW, were you in Minneapolis with your mother, or dealing with this from Idaho?
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SueC, yes both times that we took mom. I didn't read the pamphlet. I didn't know that black meant she was close to death. I just remembered seeing her blackened hand - the left one only. I called 911 and described to the dispatcher mom's black hand and her struggling to breathe.. I held the phone out so that he can hear her. I remember telling him that I think she must have gangrene in her hand because it's black. Both times, mom went to the ER. And yes, her feet and hand came back to normal.
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This is devastating. I had to specifically ask that my mom's residential hospice not put her on morphine and phenergan round the clock. I am an only child so I did not have a different point of view to contend with; there apparently is a hospice philosophy that the goal may be to just get it over with as quickly and painlessly as possible without actively primarily euthanzing someone. My mom was dying from heart and brain failure for which maximal treatment was in place, other than trying EECP which was relatively contraindicated due to her PAD and I just did not think she could handle it. Mine would not have lived much longer no matter what we did, and yet I spent much time and energy second guessing and recriminating about everything we did or did not do. Your mom could have had some more time that would have meant something. Whatever you are going through now, try not to let it overcome you...this kind of heartache is surely the most unintended consequence of having compassion and wanting comfort for a dying loved one by saving them the distress of at least a few meaningless and futile trips to the hospital or other interventions.
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Hi please can you please help me understand..ok so my mom has been on hospice..for 3 months so for the last 2 months she has gain weight..eating better sleeping better getting stronger..hospice and doctor said that they put her in stage 7..now they are trying to tell me that she might not be in stage 7...I am so confused..I am glad that she is doing better..and is so happy that hospice came on board.(the doctor was the one to suggest to put her on hospice).my question is can they jump from 7 to 6..thanks confused but so glad that mom is doing great..
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Motherof5, sounds like your mom was never in stage 7 (very severe cognitive decline...speech not recognizable, incontinent of both urine and bowel, difficult eating/swallowing, assistance to walk or even sit up.)
My mom is in stage 6 and is eating, sleeping and talking (albeit, confused) very well. Slight urine incontinence (not bad for 94) and uses "pull ups" but can tinkle in the bathroom too. She's been in stage 6 for the past year or so.
Maybe your mom just had a dip in her health and regained strength with the extra medical attention (?)
Check out Alz.org for the list of Alzheimer's stages. Good luck.
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Thank you sue..hospice said the same thing that maybe the extra attention that she is getting..plus there is a new caregiver that started working and she has a big crush on him..she lights up the room when he is there...he can get her to eat when no one can..she calls him her sweetheart...since he started working there she is always smiling and feels good....
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Never too old for "love"! 😘
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Kathy 1951, you are a doctor, my situation with the lost of my my mother was nearly identical to the lost of my mother, only it happened in 7 days. She had been on home hospice (assisted living facility)off and on for over two years. Her initial diagnosis was dementia. She was forced out of assisted living and I brought her home and hired a nurse to take car of her. The change in her environment did not help. Hospice was helpful as for as providing supplies and care. I took off of hospice in order to get her treated for dehydration and a bladder infection. I took her to the ER and the ER doctors said that she had blood clots in her stomach and lungs and they advised against treating it because the treatments would be too painful. She was admitted to the hospital and was referred to Palliative care where the doctors seemed to be pushing for hospice. They recommended that it was best for her. I had no idea at that time that they meant euthanasia. That is not what I thought they meant when I allowed my mother to be placed in a hospice facility. They instantly started her on several drugs which I did question and they did not offer her food or water because they said she could not eat or drink. I kept trying to give her water in a dropper. I know I allowed Hospice to kill my mother. I know the medicine and lack of food and water killed her. I think of her everyday. She has been dead for 8 months but the guilt is with me daily. I feel that I am a murderer. Will someone tell me how do I get over this guilt. The pain is not lessening. What can I do? How do I find peace?
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Virginia, so sorry for your lost. When a patient is in their last stage of life, eating and drinking become very painful because the stomach is shutting down along with the other organs. And blood clots are also very painful, and clots do move to the heart and brain.

Your Mom would have passed on the same timetable with or without Hospice. Without Hospice it would have been an extremely painful death. With Hospice she was to pass being comfortable and in peace. So think about this, you made the right choice having your Mother be in Hospice.
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Virginia, I'm truly sorry for the loss of your mother. But you should understand that if hospice had been recommended twice, then the doctors felt she did not have long to live. Again, hospice is for patients who will probably pass on within 6 months (doctors assumption). You might not have understood how sick she was in the beginning but when you took her to the hospital to be treated for dehydration and UTI, you could see that she was ill. If she was dehydrated, then she had already slowed down on her fluid consumption. The body knows what it needs, given the situation, and patients unable to process eating and drinking just stop any intake. Blood clots in the lungs often times are fatal. I watched a patient die in front of my eyes from a pulmonary embolism. You did nothing wrong and neither did the medical staff. It sounds like it was time for your mom to leave her earthly body. No one wants to see their loved one go, but many physical conditions aren't "fixable". Everyone (even me, as a nurse who "knows better") has trouble when we think our loved ones are "starving/dehydrating to death". But, as I know, and as it was explained to me when my dad was dying, the body is shutting down and nothing you do will make it process the food or water. Please do some reaseach on medical websites about the end stages of life. That will relieve your mind that they and you "killed" her. Your grief is causing your guilt.
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Virginia
I'm sorry for your loss.
You did the best you could for your mom. Depending on her age, the hospital doctors probably thought it best not to submit her to any more treatments. That is what hospitals do.
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I have read these comments over and over again and can identify with something in every comments. Family and friends and some on this site say I did all I could for my mother but for some reason I still feel that I let her down in the end and there is no going back. Thanks to all that commented.
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virginias55, if you cannot get past these feelings of guilt in spite of what everyone is telling you, please consider some counseling. Perhaps grief counseling would be appropriate or a psychotherapist. It is "normal" to still miss your mom after 8 months and to still experience grief. But hanging on to guilt when nothing was your fault is unhealthy. You did the right things, but none of us is powerful enough to stop death. Please come back in a few weeks and tell us how you are doing. We care!
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As a senior myself, I have my wishes written down. I hope I never have to go to a hospice unit or a nursing home. But that decision isn't left up to me.
My father died suddenly, he just walked into the den and dropped dead. None of the six children knew it until I called them. He was suffering but at home. On the other hand, my mother died in hospice from cancer. That was an ugly way to die. I will say she was a fighter, hard headed but stayed at home until 5 days before her death. That was hard on the family because someone had to be with her 24/7.
After her death, I sat down and wrote out what I wanted, sealed it in an envelope then gave a copy to my wife and one to my only daughter.
I want it to be simple, cremation, spread my ashes near my favorite forest. If they want to celebrate my life I wrote down my thoughts and said what I wanted to say to the people who may come. I have seen too many deaths in my life, but I realize my time is coming. Just let me die with dignity.
Until that day comes I'll take it one day at a time, I don't worry about yesterday or tomorrow. I want my life to be a celebration, not a burden on my family.
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Virginia55, with anyone passing, be it an elder, or a child, it is natural to go through the "what ifs". What if I did this, or what if I did that.

My Dad passed a couple of months ago, it was sudden. This time it turned out that when he tried to eat or drink the food/liquid was going into his lungs and he developed an infection then pneumonia. Being he was 95, there wasn't a whole lot the doctors could do.

My Dad had an "Advance Medical Directive" regarding medical care drawn up by his Elder Law Attorney. I used that as my guideline, what steps to take and if he wanted Hospice. Dad passed very peacefully.
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sounds like he got great, loving treatment! people are not able to swallow, esp water when they are dying. death is sooo traumatic...don't question their care...be glad he didn't live longer and suffer MORE!
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Yes I felt the same way about my mom. I believe people who watch their loved ones suffer stop thinking clearly and make decisions they regret later. I would not put my mom on hospice if I could do it all over again. She was in hospice care for 10 days before she died and she was unresponsive for all that time. Yes she was medicated few times a day. I would rather have her look at me and hold her hand. I think I did not receive enough education to help me to make the right decision. Don't let them tell you it's all about dying person . You have to live with your decision for the rest of your life.
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Yes I felt the same way about my mom. I believe people who watch their loved ones suffer stop thinking clearly and make decisions they regret later. I would not put my mom on hospice if I could do it all over again. She was in hospice care for 10 days before she died and she was unresponsive for all that time. Yes she was medicated few times a day. I would rather have her look at me and hold her hand. I think I did not receive enough education to help me to make the right decision. Don't let them tell you it's all about dying person . You have to live with your decision for the rest of your life.
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We also need to remember that some patients that are placed on Hospice often "graduate", meaning they get better and continue living for many more months or years.

I think what happens is a patient has been over mediated for so long that when they are taken off of the vast majority of their prescription meds as per Hospice, they actually start feeling better.
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