PSP brother's life ended with morphine without consulting him

[kaylaphd]

My 65 year old brother with PSP got a fever on Friday (6/8/18). His daughter talked to hospice, and they began 5 mg. morphine every 4 hours, and increased it to 10 mg. every four hours the next day. She told me nothing about it, and I have been the family member spending the most time caring for him since he was put in the skilled nursing home in July of 2017. I went to visit my brother with my 93 year old mother on 6/10/18, and he was not responsive and had pneumonia. I discovered he had not been given any antibiotic. I requested oxygen. My brother died two and a half hours later without my mom and I being able to say goodbye. My grandmother and dad died of pneumonia and it wasn't in one day. Do you think the morphine killed him?

[NannaB]

I’m so sorry you didn’t get to say a proper goodbye to your brother and you are obviously grieving. I have watched many people die from pneumonia (I worked in a care home) and if it was me who had it as well as a life limiting progressive illness, I would sooner die quickly than with the often long drawn out suffering that I’ve seen. My darling husband died peacefully with PSP but if he had developed pneumonia he would not have been given antibiotics and would have been given morphine to ease the distress. My father died in hospital from pneumonia. The hospital tried to contact me before giving him antibiotics. I would have said no but they phoned his home address instead of mine in the night. When we went to see him the next morning he had oxygen and was gasping for breath. I asked the doctor to give him morphine and she said as they had given him antibiotics they had to wait for 4 hours first to see if the antibiotics worked. He was 97. He kept pulling at the mask but they wouldn’t take it off. When the 4 hours was up they went to get the morphine but he died before they returned. If he had been given morphine and the mask was removed he would have relaxed and not struggled to breathe but died peacefully not in the distress he was obviously in. I’m not saying don’t give antibiotics to someone who only had pneumonia and no other serious illness but your brother was saved possibly many days of suffering with maybe the same outcome. His daughter, and the doctors, had a very difficult decision to make and she is also grieving. Your brother is now free. If you looked after him earlier, he would have known you loved him and it must have been awful for your mother to lose a son but I would never want another loved one of mine to suffer as my dad, mum, and both inlaws and brother in law did, struggling for breath for hours, days, before peace finally came.

May your brother rest in peace and may you soon be able to focus on the good times you spent with your brother before PSP.

Sending you a big hug.

XxxX

[kaylaphd in reply to NannaB]

Thank you very much for the big hug you sent, and your caring comments. I am sad that your husband also suffered the debilitating impact of PSP. I am very happy that my brother is free from the terrible disease which made it impossible for him to walk, talk, and difficult for him to see. I told him how much I loved him before he died, and when he stopped breathing I gave him a big hug, and told him I loved him and would miss him. I'm sure his spirit heard me then. I also prayed for his joyous reunion with those who have passed before him, my sister, father, grandparents, and two converts he baptized while on his LDS mission to New Zealand.

I have an MSW and Ph.D., and have worked with many people to make their own decisions about death and dying. Some clients have chosen to stop taking chemotherapy when they knew their death was inevitable in order to have family experiences to say goodbye. When my sister was dying of cancer and considered having her in-laws care for her children, I encouraged her to consider hiring a nanny to come from 3 to 9:00 p.m. so she could still have individual talks with her children, and eat meals with them. She hired a nanny. My mother took care of my sister and the in-laws took care of her 1 1/2 year old baby.

My brother's brain was still functioning, and he could have chosen himself if he wanted morphine and how much by pointing at a yes or no with the finger of his right hand which could still point. When my father was dying in 2012 of pseudomonas (a super bug he caught it while in the hospital), he, my brother and I refused the high dose of morphine which would have killed him in two days. Instead my father had a 1mg dose every 4 hours, and later a 2mg dose. My dad said he was in not in pain, and also refused the high dose morphine on the day he was dying. He wanted to be mentally alert as long as possible. My brother and I were the ones who stayed with my father for those last 5 days. We rotated so we could sleep. We both had good experiences talking with our dad and watching tennis with him that he loved during those last days. My dad's kidney stats were higher after three days, and he gave me a hug. Grand children and great grand children were able to visit him. I called and got goodbye messages from him his siblings and my mom who had divorced him. My brother was very strongly against any form of mind altering medication. He had three married children and grandchildren (one who lived 5 hours away and 2 lived out of state) who would have liked to say goodbye. He was not as close to his two oldest children who made the decision for the Hospice which administered the morphine. They visited him rarely and were very angry. They said very negative false things about him which they heard from their mother who divorced my brother when he had some behavioral changes prior to his diagnosis. His ex-wife did not do any caring for him, and once said, "How are you?" in a cheerful voice when I brought him to a family function. It was very insensitive. He could not speak to answer her. She could have said something about the difficulty of the disease for him or empathized in some way since she has an MSW, and knew of his love for daily physical activity. (He ran 4 times a week, ran marathons, played tennis, and loved skiing and swimming). I hope what I wrote explains why I wanted my brother to be able to make his own choice about his mental state while dying.

[enjoysalud in reply to kaylaphd]

I think after reading this sharing, we can more clearly understand why you have this reaction to the morphine (and no antibiotics) that was given your brother. At least you have helped me.

I lost my 55 year old son, May 4, 2017 to PSP.

I am sooo sorry.

[kaylaphd in reply to enjoysalud]

I am very sorry about your loss of your son to PSP at such a young age. I understand the experiences you shared because each person has his/her own way in coping with severe illness and preparation for death. In 1995 I was the last one to visit my grandmother prior to her death of pneumonia in a nursing home. She was not conscious, but she may have still appreciated my visit. During a visit the prior week her oxygen was off, and I tried to put it back. She looked at me and shook her finger. I knew at that moment that she wanted no more oxygen. She was a nurse at a hospital for over 20 years, and she did not want to prolong the time of her passing.

[NannaB in reply to kaylaphd]

Thankyou. That explains a lot kaylapd. It’s so sad when there are difficulties within families. My husband had all his end of life wishes written down and said he wanted morphine if he was in pain or struggling to breathe. The hospice delivered it to our home but he indicated he didn’t need it as he didn’t have pneumonia. Every decision made was made by him putting his thumb up or down. The doctors didn’t ask me what he wanted, they asked him. It’s sad your brother wasn’t asked what he wanted if he could still communicate with his fingers.

I’m pleased you managed to say goodbye to your brother and I believe he would have heard what you said.

Take care.

XxxX

[kaylaphd in reply to NannaB]

Thank you NannaB! I wish I had helped my brother share his end of life wishes when he was still able to talk. He was a quiet person, and did not say anything after the times I brought up my sadness about his crippling disease. He did like me saying a prayer for him each time I came, and he shed tears a few times. He thanked me for the care I gave him when he could still talk. He was still able to chew his food. I was thinking that if his finger stopped working, I could have him hold a straw between his teeth, and point it one direction for yes, and another for no.

[doglington]

I can only echo what nannaB has said.

My husband with PSP needed antibiotics and we allowed him to die peacefully instead. He wanted that.

It is sad that you were not able to say your goodbyes but, as he had PSP you say many silent goodbyes don't you ?

Hold onto your memories and be thankful he had a peaceful end.

xx

[kaylaphd in reply to doglington]

Thank you for your comments. I am glad your husband died peacefully. I just wanted my brother to make his own choice since his brain was still working, and he could have died peacefully with a lower dose of morphine, and been able to hear the goodbyes.

[doglington in reply to kaylaphd]

I understand absolutely. My husband could only squeeze my hand but made his wishes known. He had no medication. He had time to say goodbye to all his family. Thankfully we were all united and all was peaceful.

It is so sad to read of family disunity continuing at such a time. I feel so sorry for the pain you are suffering.

x x

[kaylaphd in reply to doglington]

Thank you very much for you understanding. I'm happy you respected your husband's wishes. I wish my brother's ex-wife had not rejected him and that in his time of need she could have just sat by him to watch a movie. My brother enjoyed watching movies with me on the big screen on the first floor while I fed him his favorite fruit, rubbed his neck, shoulders and back, and held his hand. The skilled nursing would not let my brother watch the large screen television on the retirement floor unless a family member or friend was with him. (He could not see what was happening on the very small TV in his room). When he first came to my mother's home over 8 years ago, he cried off and on for days about his wife not loving him. After she divorced him, my brother never went to a singles activity or on a date. He still talked about wishing his wife loved him. Not only did she reject him, she tried to turn his children against him to justify her divorcing him. A picture was put in his room of his ex-wife, children and grand children. The nursing staff asked why there were no pictures of my brother in the room. The children had not had a photo taken with all of them and their dad since the divorce. I asked my brother if a previous photo of everyone including him and his wife was okay. He said, "yes." I taped an 8 by 10 photo of he and his wife with all 6 of their children on the wall next to the head of his bed where he could see it.

I am sure there will be unity at the funeral. When his daughter came after he died we hugged each other. My mom and I cleaned out my brother's room, and we sat with his two children and ex-wife while they discussed funeral plans.

[doglington in reply to kaylaphd]

Well done. I respect your restraint. It is too late to make things ok but better not to sully the memories of the funeral as it wouldn't help.

A sad story.

xx

[honjen43]

Hello kaylaphd.

I too understand your distress. My husband had CBD and died after three bouts of aspiration pneumonia in quick succession. He survived the first bout as he was given antibiotics. At the time he was unresponsive, nor was I consulted either until they had been given.

He recovered briefly and then needed a further dose of antibiotic to kick the infection. I was not sure how well he would recover after a second treatment. He did but was still completely bedridden afterwards. His mind was bright and alert for about a week, time enough to transfer to a nursing home and weakly celebrate our 50th anniversary when I could see a flash of the man I married. He was eating very little.

Immediately after that celebration his swallowing reflex stopped and he accepted a morphine derivative and meds to stop his distressing cough. He stopped breathing 3 days later.

I understand your distress at not being able to say your goodbyes. The doctor had taken me aside and explained that my love was very weak and that treatment, as in antibiotics, would not give him quality of life or prolong life for very long. I could see that this was so, and it was upsetting to watch him wracked with coughing. I did not disagree with the doctor. My husband obviously simply wanted peace. He asked me if I would be all right, so I knew he understood what was happening. I did have chance to tell him goodbye. I stayed with him day and night, but he left me while I was out of the room!

You were taken by surprise and shock and you will feel angry that you, as main carer, were not consulted, but there does come a time when it must have become obvious that it was time for nature to take its course. Please don't take your anger out on your niece! She is grieving too and may feel guilt too that she instigated the morphine dose. Your brother had been cared for in the home for nearly a year. I am sure he would have been visited at least once by a hospice nurse, and his condition noted.

I was told by the doctor, too, that when the time came, it would not be my decision to start end of life care, but theirs alone, the medical staff.

Don't let your anger eat you up! Make your peace with yourself, and your niece, and be calmed by the thought that your brother is free of pain and suffering.

You deserve a big hug for your caring, and time to sit and reflect in peace about the brother you loved.

Hugs

Jen xxx

[kaylaphd in reply to honjen43]

Thank you very much for your caring and understanding comments!

[Tippyleaf]

So sorry for your loss. If it were my husband I would like to think he would have all the morphine he needs, to have a death free of pain and anxiety. Antibiotics and oxygen will not cure PSP simply prolong the suffering. It must have been incredibly hard for your niece and caught up in the emotions at the time perhaps did not think to

Include othets which must be hard for you.

Easy for me to say but anger with your niece will not bring your brother back.

Take care sending you a big hug st this painful time

Love Tippy

[kaylaphd in reply to Tippyleaf]

I gave my niece a big hug when she came after my brother died. In January she had promised to call me when notified of his falls and illness. I visited my brother twice the day after serious falls which I had not been told about prior to his daughter's promise. She was not visiting him after his falls and rarely saw him. After one fall my brother told me his shoulder was hurting him. He had not told the nursing staff. I was able to tell the doctor, and she ordered physical therapy and compresses for my brother's injured shoulder. Several months ago my brother had a serious swelling in his left hand and told me it was hurting. I was able to request that the doctor treat his hand. One day when I arrived my brother said he was miserable. His shirt was wet with urine. I was able to take it off and clean his body which was very red on the front and back because of being left that way for hours. I complained to the state about that day and my brother having a wheel chair for a 5'3" person when he is over 6 feet tall. Finally my brother got a wheel chair which fit him, and he received better care. (His daughter had told me not to make any complaints). My brother had a fever two days before he died, and his daughter did not call me as promised. I was just making a regular visit with my mom on the day he died. I am glad we were with him when he passed to the spirit world.

[Tippyleaf]

I feel your pain. What a wonderful caring sister you have been through the horrible PSP journey your brother endured. Clearly you did much to ensure your brother got the best possible care.

Please do not think I was being critical of you that was absolutely not my intention. Rather I hoped to offer some small comfort at this difficult time.

Love Tippy

[kaylaphd in reply to Tippyleaf]

Thank you for your comments and kindness!

[Mcates]

Morphine is often given for respiratory distress. Perhaps he was a little distressed. The thing with pneumonia is that often you can have it for quite some time before the symptoms arise. Your poor brother may not have even known. Sometimes when it is bad doctors do not give antibiotics as it can make the inevitable longer and more distressing. 5mg - 10mgs morphine is not a large dose. It may seem it but as a community Matron I have given 100’s. The pneumonia no doubt was the cause of death and the morphine may or may not have hastened it. I’m so sorry for your loss. At least he is no longer suffering and that wonderful mind you talk of is free. Sending hugs. X