I can’t speak to your father’s situation, but morphine IS an appropriate choice of medicine for people with breathing problems who are dying. Yes, in theory, morphine may hasten death a little bit. It is given to people who are having trouble breathing at the end of life because it decreases air hunger and the anxiety associated with it. The idea is not to give so much that it stops a person from breathing (which of course would be euthanasia), but simply to suppress the symptoms that the person is experiencing. Of course there are trade-offs with morphine, including sedation, but it is an incredible blessing for people who are really struggling to breathe. It’s unfortunate that your father became delirious, although it is also possible that his illness and not (or not just) the medication was to blame.
I may be spoiled because I live and work near an outstanding hospice facility. I’m sure not all hospices are the same with respect to how well they address the needs of patients and families and how well they explain what they are doing, and it sounds like this one didn’t do such a good job with communication, but I agree with teriwitt that I wouldn’t want to die without hospice care.
When my father was in the hospital, they were estimating 3 months. But he was eating, and able to talk and read, albeit nowhere near his normal state.
Originally, they were trying to place him in a hospice or nursing facility. The nearest hospice was too far away for me to feel comfortable having my 87 yr old mother drive back and forth every day. She and I went and visited a “nice” nursing home nearby. When we left, we just looked at each other and said, forget this, let’s bring him home. We both felt such a sense of relief. When I told the hospital social worker, who was very, very nice, she was upset, because of the strain on my mother previously, when she would not accept help. I said to her, look, she can do what she needs to do: she’s an RN. She really wants this. We have a lovely solarium where we can set up his bed, where he can see the outdoors, listen to his music. He won’t be stuck in some dark back bedroom. I will stay for weeks. With help from the hospice nurses, a proper hospital bed, and respite care it will be okay.
We both felt that he was sinking much more rapidly than the hospitalist and co thought, and we turned out to be right.
BTW, I really had to persuade my mother to allow the hospice nurse in. She is extremely independent and pigheaded. My father’s oncologist had been trying to get her to accept help for months. I told her that I knew several people who worked for hospice, and that they were all wonderful, thoughtful, caring people. Afterward she thanked me for persuading her. She thought the experience was the best it could be.
I’ve had mixed experience with hospice care. My mom was living in a memory care facility when she was put on hospice and she remained there. She had a hospice volunteer in her room around the clock. These women worked 12-hour shifts and were incredibly cheerful, sensitive and respectful. They seemed sensitive to my needs – I flew in from New England to Florida when my step-father told me that he had been warned that the end was near. I arrived after 11 pm and got in to see her the night I came in. She was unconscious by then. I don’t think they were giving her any drugs and I don’t think she was in pain. They would bathe her daily (generally humming to themselves while they did), and check her vital signs on a regular basis. At one point, they administered oxygen. They explained to my step-father and me that they weren’t trying to prolong her life, but thought that it would make her more comfortable. He really wanted to be there when she passed – I didn’t feel strongly about it either way for myself. The day my mom died, I told her that she didn’t need to wait for my daughter to arrive if she wanted to let go and that my step-father really wanted to be with her when she did. She passed away that evening about 20 minutes after my step-father and I had left for the day.
Although I wasn’t present for my step-mother’s death, my dad thought very highly of the hospice folks who worked with them.
I wasn’t overly thrilled, however, with the hospice folks who worked with my dad when his pancreatic cancer returned. He did not get around-the-clock care through hospice – perhaps because he was in an assisted living setup? Or maybe it was just a different state or a different hospice organization. We hired around-the-clock care for him, and my sister was with him when he passed. I had been down to MD to arrange the hospice care and had returned to New England to arrange for a family leave of absence from work, pet care, etc but Dad passed away in the wee hours of the morning the day before I returned to care for him for as long as was needed. I can’t say I really have complaints with the hospice care he received – it just wasn’t at the same level as the care my mother had received.
There were only two hospices within 30 minutes of my mother’s home. I visited one and immediately crossed it off the list. I was able to enter at night through an unlocked back door. Upon entering, I could smell cigarette smoke. Apparently hospices have smokers who they try to accommodate. I loved the second hospice, but they were full (They had smokers, too, but they were able to go outside and smoke.). This left us no choice, but to bring my father home, at least until there was a room at the second hospice. We hired a home health aid to come in during the day and my mother, my daughter and I each took a night of “watch”. I’m glad he was at home, even though it bothered me to see everything as it played out.
Yes, air hunger is very common in the final hours and morphine definitely helps with that. It is often much more difficult to help people with this if they have a morphine allergy and you have to use other medications. And honestly, I don’t know a hospice out there that wouldn’t utilize morphine if needed - it’s just that common. If someone has COPD or some similar respiratory illness as their terminal diagnosis, you really don’t want them suffering with air hunger in the end - I promise you, it’s not something you’d ever want to watch a loved one go through, even if it means they die six hours earlier than they would have without the morphine. A good care team will always start with the lowest dosage possible and titrate up until symptoms are managed. And honestly, if someone is looking to have their loved one alert for the last day or two so they can visit and say all the things they want to say, it’s unlikely to happen - it’s just the way the body shuts down… same with food and water - you really don’t want to be giving them anything beyond what they’re asking for in the end. When a body is shutting down, you don’t want to add the demands of digestion/urination/defecation to the lists of things the body is struggling to maintain. So hospice will almost always encourage caregivers to take the lead from the patient - if they don’t ask for anything, don’t force anything on them.
My experience was, 80% of people followed a very similar trajectory in the final 1-3 days, but there will always be people who don’t, and for some reason or another, die with very little notice, usually from an unrelated condition to their diagnosis.
And if I can add one of the most important things I can ever, ever, ever advise people of, if they have a loved one in hospice, ask, demand, whatever, that they give you a copy of the booklet, Gone From My Sight. It is a remarkable booklet that over and over again, loved ones told us it better prepared them for their loved one’s death, than anything else. Almost anyone on the hospice team should have a copy on them - if not, ask where you can find one. It is a universal piece of literature that anyone involved in the hospice business knows about. It’s about as close as you can come to telling you what you can expect in the final months/weeks/days/hours of someone’s death. It can be read in about 30 minutes.
Sorry about your dad.
My FIL was in hospice prior his death and it was as near as you could get I think to a good death experience. It was a non-profit, small unit facility of only 10 beds and very well appointed. Easy for family to stay overnight. The care and attention was far beyond what he had been receiving in the hospital. Very comforting.
My mom died in the hospital but one option was to have her transferred to a hospice that was IN the hospital. The hospital had remodeled several rooms to make a dedicated unit and it was very nice. I wish we had been able to transfer her there–it would have been much better.
The hard decision is that hospice is NOT meant for recovery of the patient. There will be no extra treatments, medications (over normally taken) etc given to the patient. AND those guidelines VARY between hospices. In my mom’s case a blood transfusion would be “comfort care” and other facilities would NOT do transfusions. It’s not an easy decision. And especially hard when hospice is showing up on your “doorstep” and wants to talk with you while your loved one is dying and you want to spend that time with them. Stressful. If I had to do it over again I would research options BEFORE anything happens.
My father died in Hospice this past summer. He had cancer that had spread, was given a few months to live, then caught pneumonia. After being in the hospital 3 days, he took a turn for the worse and they gave him 3 days to live and advised we put him in hospice. He was there 4 days then died. He was on oxygen and could speak, but labored. He was lucid and understood exactly what the doctor told him…this is not a hospital, it is hospice, to make you comfortable but not try to extend your life artificially. Did he understand and agree?
In private the doctor told us without food or water, patients typically die within 5 days…some linger longer. Dad had no appetite, and would rarely drink. He was conscious for 2 days, but really having physical problems breathing and coughing up blood. We wanted him to have as much morphine to calm those symptoms and it did…he was also on anti anxiety medicine. The 3rd day and the day he died he was pretty much unconscious, but hanging on. The doc asked if we wanted his oxygen removed, but we said no, not yet. We didn’t have to do that, thankfully. I don’t know if the drugs sped up his death, but he was ready to go. He was so brave. I’m sure he was full of despair, but he didn’t show it…was strong for all of us, never broke down…talked constantly of his expectations.
was your father eating and drinking? If not, I would suspect that was the main thing that caused the speed of death…the drugs just helped it along. I am so thankful for those drugs.
Thanks teriwtt and all who talked about morphine use,respiratory depression and end of death. I felt terrible with my mom–she was in great pain and needed relief–I’m the one who said “give it to her”. She was not in hospice so the hospital staff was afraid to “overdose” her but willing to follow my lead (I’m a pharmacist but not with experience in this particular instance). Morphine hadn’t done much for her and it was switched to Dilaudid by the physician.
After reading several studies I discovered that Dilaudid is the drug of choice for WOMEN (over morphine)–it works better and gives more prompt relief (and definitely made an immediate difference for my mom).
As for actually being present when someone dies-- it is actually documented that most times people choose to die alone. They actually wait for loved ones to leave the room.
And thank goodness I knew about “the death rally”–the person suddenly perks up, talks to everyone, eats food, and then dies in two or three days. Knowing that end stage helped tremendously.
These are all things we talk to families about when they’re thinking about signing their loved ones onto hospice; chaplains and social workers were required to do ‘information and consents’ visits with referrals, so we had a solid understanding of what information is presented at that first visit. Unfortunately, there is SOOOO much material we have to cover in that first visit, and waaaaaay too much paperwork to be signed, that it is not uncommon at all for people who are in distress to not remember some of the stuff we tell them - which is why having a copy of Gone From My Sight is incredibly helpful. If it’s lying around, family members can share it with anyone who stops by to visit. Regardless, the hospice team’s job is to continually educate the loved ones, no matter how many times things need to be repeated. People are under stress at times like these, and it’s just not uncommon to be given information and it be forgotten. There’s only so much new information people can take in when in distress; part of the hospice team’s job is to reinforce any teaching that’s been done, as long as it takes - obviously some people are going to be better at it than others, but it’s always stressed as a major part of our job.
I have more thoughts I’d like to share, but am on my way out tonight. Will catch up later. But in any discussion about hospice, we need to be careful about the terminology that is thrown around, and different people might have the same experience, but call it something different.
toledo- my condolences on your loss.Losing a loved one is always tough, and if the last few days are confusing or concerning, it adds to the mix of emotions and concerns.
My mother died 10 years ago, of lung cancer, after 8 months on hospice care. Two weeks before her death she moved from AL to nursing home care, as she felt very weak and believed she needed more help, despite having 24 hour a day private care in AL at that point. She died 2 weeks later. During those 2 weeks, she had gradually decreasing amounts of time a day when she was awake or conversant. Her pulse was taken and under the tongue morphine was administered. When asked, the nurse explained to me that they measured her pulse and given her lack of activity, read a heart rate higher than typical as indicative of the body working too hard. They viewed that as pain, however unexpressed. I have not run this explanation by any medical experts: her death was not unexpected, given a stage 3 B diagnosis 16 months earlier and the fact that the only treatment option that made sense for her was radiation. I did know that lack of oxygen and decreased ability to breathe were anxiety provoking experiences I wanted to avoid for her. I also knew she did not want to prolong her life, if some level of quality was not there. Things were calm and smooth at the end; the hospice workers were good about explaining what she was experiencing, when to stop helping her eat and how her circulation was diminishing, as evidenced by cold extremities. Because of that, we knew when the end was near.
I had ups and downs with hospice and did have to advocate for her at times during her long tenure with them. In the end, I am grateful I did not see see her suffer. If it helps at all, dying people, with or without morphine seem to be less and less aware of their surroundings and their ability to interact is diminished.
I know people who saw their loved ones agitated at the end of life despite hospice care. That seemed more distressing to me than a quieter departure, though it is never easy.
@toledo I am sorry for your loss and your worry about the ending. hugs.
I had two and a half experiences with hospice . One, years ago, with my sister who died at home with breast cancer. Hospice was what enabled her to die at home, they got the bed etc etc etc. They didn’t come much the final days and I think my sister would have been better off with more morphine, but they told me what to do for comfort for her (ice chips sorts of things). they expected 24 hrs after i got there and she lasted 3 days. they were great for the aftermath and getting the funeral home, etc.
Next up was my dad’s wife, I wasn’t as closely connected with that one because her own daughter took care of her mom after she went into assisted living. I know they thought highly of her care and were very grateful.
The half experience I have recently is with my Mom. She has dementia and gets low blood pressure. She had had two trips to the hospital because of the low blood pressure, one ended with my brother and I being told they doubted she would last for us to arrive (8 hrs for both of us from different directions) Meanwhile they are running tests and scans and she doesn’t understand what is going on. The AL place sends her with the EMT’s. After the next to last time, I hired private care givers who went with her. The last time, I contacted hospice . Not because she seems like she is dying any faster (if you didn’t guess, she popped right back to her normal when bro and I arrived), but because the hospital and tests and worry WERE going to kill her (or me on one of these panic drives). So now we have had hospice for 90 days (just got recertified). I am happy with the care. The RN checks in LOTS more often than the RN at the AL place. They are VERY liberal (IMHO) with the pain meds (Mom has since fallen and broken her arm, needed pain meds). They also had some turf wars with the AL care and the private care and whatever. But I am over all happy that I can call and say Mom seems anxious and they can prescribe something without having to haul Mom around. And they care about her as a person. Now someone comes every day and more company is good for Mom (she is a social creature). We did ask to have something other than morphine because Mom didn’t tolerate the dose they gave her. You still (IMHO) have to watch and adjust for the patient who can’t speak for themselves. If hospice did nothing but keep her out of the hospital, (yes, they took her when her arm was broken, hospice got called before the EMT’s, which I found absurd rule following by the AL place, but whatever), I would be satisfied. at least so far, so good.
We had Hospice for both my dad and step mom. They were terrific. My step mom had their kind help for about three months. They staff was terrific, helping both her and our family.
My dad had hospice for only a couple of weeks. We requested the same hospice team, and would have had them except for the holiday week timing. Still, they were helpful and kind.
Both times, hospice care was provided in the home, and enabled both parents to be at home until they died, which was their wish. We couldn’t have done it without them.
My mom was in a skilled care facility, and to be honest, I wish we could have done hospice care for her at home too…unfortunately, she needed total care…and this just wasn’t possible at home without round the clock help. And even with that…it would have been difficult.
Yes, an increased heart rate with little activity is an indication of discomfort or pain… I mentioned there are several ways of discerning whether someone is in pain or not - that is one way. Other ways are lots of fidgeting and agitation - also low moaning or groaning, as well as grimacing. We saw lots of people who denied having pain (because they didn’t want to worry their loved ones), but exhibited some of these signs, and when encouraged to tell the truth to the hospice team, will admit they’re having pain. With people who are completely bed-bound and need turning, you will often see these signs as they are being turned because it’s just too hard to hold back when that’s being done to you. Of course, good hospice care will encourage you to medicate someone before turning them or providing any kind of hygiene, such as bed bath, etc. You just do anything to minimize the pain and discomfort they might be feeling. These are some of the things non-medical professionals can assess at every visit, and we (non-medical staff such as social workers, chaplains, etc.) were required to document whether or not at every visit we had, someone was showing any signs of pain - not documenting this could get us in trouble.
One thing I learned in my father’s difficult final illness is that the human body doesn’t necessarily follow the textbook. The very best medical professionals can only make educated guesses at best about the time a patient has remaining, and they get surprised by patients all the time. I also learned that correlation isn’t causation; i.e., if a patient is put on a drug, and then something unexpected happens, that doesn’t necessarily mean that the drug caused the unexpected thing.
My dad was just about to put on hospice when he died. We had already spoken with a hospice MSW and RN, and we knew morphine was going to be in the picture. If it had come to it, I would readily have approved it, even if guaranteed it would shorten his life by a few days or weeks. By then, the only thing that mattered to me was allowing him to die as easily as possible. I wasn’t interested in prolonging his life as he was living it at that point.
teriwtt, may I say how helpful your comments always are on this topic, and how comforting they were to me in my father’s final days.
We have had two very different hospice experiences. My grandmother dies at 91 from lung cancer. She did 4 months of treatment then it became apparent that it wasn’t working. My mom and her brother went round a bit about calling hospice. He brother thought it meant “giving up” rather than comfort measures to help her quality of life in her last days. In the end we called and she got oxygen and a hospital bed at home to help with breathing. My sister and cousins came and the hospice nurse really instructed everyone on how to help her. She took some morphine at night the last two nights but was actually up and around in the day in a fit of last minute energy. She ended up dying quite suddenly and wide awake at home which was how she wanted to go.
Her sister also used hospice but was in a care facility. She had broken a hip then had pneumonia and ultimately MRSA. She was more frail and suffered from dementia going in to the broken hip. Hospice provided palliative care and was a different designation that “curative” care. It was a decision that she wasn’t getting better so measures weren’t being taken to try to keep her alive but rather keep her comfortable. It also allowed for round the clock visitation and other special considerations. She was on morphine as a comfort measure, but would not have been responsive otherwise anyway due to her various conditions.
Both situations were as positive as they could have been. With my grandmother who was dying but still vibrant to the end I had to implore people to come get there visiting in because it was harder for people to see than the end was near. I think that can be hard for families when they decide to use hospice. For me the take away is that hospice care is palliative and geared towards helping the patient to be comfortable and have the best quality of life possible up until their death and to be able to die as much as possible on their own terms. It is also geared towards supporting family members with both medical information and grief issues.
My FIL, who (despite a DNR) was airlifted to ICU after a stroke because the person who found him called the aid car, had a very different death and one that I would not choose for myself. If you want to know why medical costs are so high in this country his last three days of life would enter into it for sure. He SHOULD have died at home in his bed.
DNR papers need to be kept in a spot that emergency personnel will find immediately or they are useless. FIL’s was on dining table and a note on the refrigerator door (not that they were needed)
I haven’t read all the posts here, but wanted to add my experience. My mother was in a home specifically geared toward Alzheimer’s patients. She was under hospice care for about 6-8 weeks. When we met with the hospice nurse to do all the paperwork the day she was placed under hospice care I was VERY clear that should the end look imminent they were to call ME, not my 87 year old father. I saw the notes she took, and the head nurse from the facility did as well, it was clear that these directions were there in her paperwork. Despite this, the phone call was made to my father at about 8:30 on a Saturday evening. My dad unfortunately still insists upon living on his own, and tends to drink 1-2 scotches each evening, then promptly fall asleep by about 7:30-8:00. I did not get a call until 1:00 AM, and that call was made to me because, and I quote, “Your father did not answer just now when I called to let him know your mom had passed.” She also told me she had called my dad the previous evening at 8:30 to let him know she was close to death. I quickly, repeatedly, told this hospice nurse not to call him back in the middle of the night to give him the news, told her I would handle telling him. Again, despite this, she called me back 10 minutes later to say that she had finally gotten through to him. I was furious…
Because they did not call ME the previous evening at 8:30 I did not get to go see my mom and say goodbye. My father has no memory of getting a call at 8:30…he was half asleep when he answered the phone. I did not have the heart to tell him, I simply asked if he remembered answering the phone that night. When he said no I immediately dropped the subject, though I did check his call history, and sure enough, they had called.
This happened in July. For personal reasons that I do not wish to get into here, I have not reported the events to our local hospice…but I did talk with the nurse from the facility, and she agreed, she remembered me requesting the calls come to me. We were doubly unfortunate because the fact that this happened on a weekend evening meant that staffing was low at the home as well, so no one checked the paperwork closely enough to catch these errors. I asked her to share our experience, in hopes that this does not happen to another family in the future.
I could not have managed without hospice for my mother.
She was in an Independent Living apartment in a CCRC, had Alzheimer’s and a live-in 24/7 caregiver, and had been declining slowly for years. When the decline became steep, the nurse overseeing the IL apartments recommended we call in hospice.
Looking back, without hospice to help us deal with the agitation, the skin breakdown etc., I don’t see how she could have stayed in her home (the apartment) the final few months. I’m a PT and oversaw her care closely all those years, but in the last few months she needed more than the caregiver and I could give her.
The hospice nurse came in 2-3x per week, adjusted meds, checked skin, changed dressings etc. We had oxygen and morphine ready to use, but in the end Mom needed neither. She just went to sleep one night, slept all the next day, and died quietly in the evening. The hospice nurse was actually surprised to find Mom had passed over the weekend.
I was told that if someone is not in hospice care and dies at home, the police have to come out and treat it as a possible homicide. Instead, all we needed to do was call the on-call hospice nurse to certify the death, and then the funeral home.
I know everyone’s experience is not the same, but hospice was absolutely the right choice for Mom.
I’m having a hard time with convincing my mother to keep the DNR paperwork out in case of an emergency. Now that my father is gone, I believe it is very important that the paperwork be left out for EMTs. She says it is morbid to look at, so it will be hidden away in a desk drawer. I spoke up with the front desk at her facility and they don’t want to be responsible for presenting it if needed.
It was so much easier when both were alive because one would always call me and I could drive be there within 5-10 minutes. Does anyone have a parent that wants all measures to be taken to resuscitate them? My parents had filled out forms in that manner many years ago without my knowledge. I only came to realize this after a pneumonia hospitalization with my mother. I think some seniors have no idea what they are signing up for on those forms and perhaps that should be updated as they get older and sicker.
My father’s oncologist had been trying to get her to accept help for months. I told her that I knew several people who worked for hospice, and that they were all wonderful, thoughtful, caring people. Afterward she thanked me for persuading her. She thought the experience was the best it could be.