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On Death and Dying
May. 13th, 2011 08:56 pmThat sounds very dramatic for a subject, doesn't it? Well, it's just that this past few days at work, my time has centred around that very subject. It's been heart wrenching, inspiring, and uplifting, in equal measures. Let me tell you about Mary.
Mary was a woman in her mid sixties, who had a fairly long history of heart disease. She came into our hospital for a procedure that was supposed to alleviate some of her symptoms, and hopefully give her a better quality of life. She and her husband Sam discussed the outcome at length, and she decided that if things didn't go as planned, she would not want to be subjected to heroic measures to keep her alive. A good thing to think about before major surgery for anyone, for sure. The operation went fairly well, although Mary's post op recovery was slow enough that she ended up in our ICU. I looked after her at that time, and she was doing very well by the last day of my set. However, when I came back several days later, she had had a terrible setback, which ended up severely injuring her kidney function, and forcing her to go on continuous dialysis. Nevertheless, her spirits remained high, and she fought back. Again she looked on the road to recovery, weaning off the ventilator, getting up and about with physio, off dialysis. Then, a few days later, another setback: pneumonia. Back on the ventilator, this time with a tracheostomy. Still, Mary kept smiling, and fighting on. Her husband, obviously her soulmate, was unstinting in his support.
This pattern repeated itself several more times over the weeks and eventually months of her stay in ICU. Each time she would get almost to the point of being ready to leave ICU, and each time the crash would leave her weaker. Over the months, I looked after her a number of times, and was always struck by her determination and gumption. However, the last crash was the worst: she was up walking in the hall with physio, off the ventilator almost 24 hours, looking great. Then, the next day, she got another pneumonia, this time a really bad one. She was still dialysis dependent, and now she was back on the ventilator 24 hours a day. I looked after her for 4 shifts last week, after not having done so in several weeks; I was shocked by her deterioration, but still she was fighting on. After such a long stay, she had become a chronic ICU patient. Sadly, I have to admit that looking after a chronic patient isn't as exciting or challenging as someone in crisis, and a lot of the nurses were less than keen; also, being stuck in ICU made Mary behave in ways that might seem demanding or manipulative to some points of view. When I came back this week after a couple of days off, I was assigned to Mary yet again; I admit I was not delighted, although I would never let her see that. As it turned out, it was a good thing that I was the one with Mary; younger nurses might have found the next bit harder to deal with. The Thursday before she'd had her hair cut, as Friday was her 66th birthday; she was only 3 years my senior. Friday she and her family celebrated her birthday, but it exhausted her. When I came on this Sunday, the difference in her attitude was apparent to me; she was becoming more withdrawn and frustrated. We talked a bit, and she wrote to me that she "felt like she was growing into this bed", after hitting the 100 days in ICU mark. She was getting weaker, dialysis exhausted her and her smile, always brilliant, was more and more forced. On Sunday, she only tolerated a brief run of dialysis, and asked to be taken off. I could see that she was losing hope. On Monday, she refused dialysis. She asked the ICU doctor what her chances were for recovery, and he was very honest with her. It would be a very long haul, with no promises that she would not continue to have more setbacks along the way. Afterwards, we talked for quite awhile about how she was feeling; she told me she just didn't know if she had the strength to go on. I was pretty blunt with her; I said "Mary, everyone dies. Sometimes no matter what we do, that is just what happens. You're the one lying in this bed; you are the only one who knows how much fight you have left. But whatever you decide to do, know that we here in ICU will support you 100%. If you have the fight to go on, we'll do whatever we can to help; if you decide you have had enough, we will make sure you are kept comfortable, and support you in that way. This is a hard conversation to have, I know."
We left it at that, and Monday the dialysis team came by; again she refused dialysis, saying she wanted to talk with her husband. The physician called him and told him about this, and then I spoke with him. We talked at length about it all, and he was pretty amazing; he knew very well what Mary was going through, was prepared for the possibility of her dying, and even though he wanted her to fight on, he was prepared to support her decision and her. When he and their daughter came in there was a meeting at Mary's bedside with the ICU doctor, and the family, and Mary, and me. The doctor told Mary that she would be dialysis dependent for the rest of her life; if she chose not to have it, she would die of renal failure fairly quickly. Mary looked at him, and said "I don't want dialysis". Her choice was made; she had decided that she was ready to die, if that was was was to happen. It was her choice, and we respected it. In cases like this, we change the focus of our care from trying to cure to making sure that the person is as comfortable as possible. Therefore, all things that do not contribute to comfort are removed: feeding tubes, heart monitor, any medications like antibiotics etc. are stopped; medications that help comfort are continued.
We also consulted the Palliative Care Team; they are wonderful in our hospital, and the support and comfort the team give to the family is so important.
At the end of Monday's shift, we anticipated that the next day we would move Mary to a private room in ICU, and let nature take its course. I was glad that I would be on again the next day. On Tuesday (yesterday!) I was talking to our Social Worker, who is a great advocate for the patients, and a pretty amazing person when it comes to getting things done. She asked if Mary had any last wishes: did she want to die at home, for example? I have to admit I hadn't thought about that at all, but we have arranged that twice in the last few years. L. went and asked Mary and her husband if that would be something they would want; and yes, yes, Mary wanted to go home. So, yesterday afternoon, with the participation of the entire team, it was arranged. Palliative Care was there for backup, a special hospice nurse was hired from a private agency by the family, the Ambulance was booked, and the logistics were worked out. At nine o'clock this morning, the ambulance would pick Mary up, along with one of our Respiratory Therapists to look after the ventilator, and one of our ICU nurses to look after Mary, and she would go home. The family would be waiting for her, her bed prepared with her favourite pillows and blankets, and she would have time to spend with her children and grandchildren; then the RT would take her off the ventilator, the RN would give her medication to alleviate any feelings of discomfort, and the Hospice RN would take over Mary's care. Mary would die at home, in the loving arms of her family and friends.
(Unfortunately, I was not going to be at work today, so another nurse volunteered to be the one going with Mary) Mary's daughter told me that she was looking at this as a gift: in Mary's entire stay with us in ICU, Mary had so little control over what happened, and now, in this at the end, she had taken control; she had decided it was her time, and I think it empowered her in a way.
One of the Palliative Care physicians has written about caring for the dying, and he says that what a dying person wants most is to have the fact that he or she is in fact dying acknowledged; to know that it is alright to talk about death, and to be assured that they will be kept comfortable, and that they will not be alone.
I really hope that in some way, I helped Mary accomplish this.
Yesterday afternoon, I washed Mary's hair at her request; her daughter packed up her belongings, and her husband kissed her and said, "see you tomorrow, at home".
At the end of my shift, I said goodbye to Mary. I told her I would hold her in my thoughts today, and pray for her. She smiled at me, held my hand, and I cried a little.
Wind to thy wings, Mary.
ETA: Mary's obituary was in today's paper. It said she passed away peacefully at home, with her family around her.
Mood: sad
Mary was a woman in her mid sixties, who had a fairly long history of heart disease. She came into our hospital for a procedure that was supposed to alleviate some of her symptoms, and hopefully give her a better quality of life. She and her husband Sam discussed the outcome at length, and she decided that if things didn't go as planned, she would not want to be subjected to heroic measures to keep her alive. A good thing to think about before major surgery for anyone, for sure. The operation went fairly well, although Mary's post op recovery was slow enough that she ended up in our ICU. I looked after her at that time, and she was doing very well by the last day of my set. However, when I came back several days later, she had had a terrible setback, which ended up severely injuring her kidney function, and forcing her to go on continuous dialysis. Nevertheless, her spirits remained high, and she fought back. Again she looked on the road to recovery, weaning off the ventilator, getting up and about with physio, off dialysis. Then, a few days later, another setback: pneumonia. Back on the ventilator, this time with a tracheostomy. Still, Mary kept smiling, and fighting on. Her husband, obviously her soulmate, was unstinting in his support.
This pattern repeated itself several more times over the weeks and eventually months of her stay in ICU. Each time she would get almost to the point of being ready to leave ICU, and each time the crash would leave her weaker. Over the months, I looked after her a number of times, and was always struck by her determination and gumption. However, the last crash was the worst: she was up walking in the hall with physio, off the ventilator almost 24 hours, looking great. Then, the next day, she got another pneumonia, this time a really bad one. She was still dialysis dependent, and now she was back on the ventilator 24 hours a day. I looked after her for 4 shifts last week, after not having done so in several weeks; I was shocked by her deterioration, but still she was fighting on. After such a long stay, she had become a chronic ICU patient. Sadly, I have to admit that looking after a chronic patient isn't as exciting or challenging as someone in crisis, and a lot of the nurses were less than keen; also, being stuck in ICU made Mary behave in ways that might seem demanding or manipulative to some points of view. When I came back this week after a couple of days off, I was assigned to Mary yet again; I admit I was not delighted, although I would never let her see that. As it turned out, it was a good thing that I was the one with Mary; younger nurses might have found the next bit harder to deal with. The Thursday before she'd had her hair cut, as Friday was her 66th birthday; she was only 3 years my senior. Friday she and her family celebrated her birthday, but it exhausted her. When I came on this Sunday, the difference in her attitude was apparent to me; she was becoming more withdrawn and frustrated. We talked a bit, and she wrote to me that she "felt like she was growing into this bed", after hitting the 100 days in ICU mark. She was getting weaker, dialysis exhausted her and her smile, always brilliant, was more and more forced. On Sunday, she only tolerated a brief run of dialysis, and asked to be taken off. I could see that she was losing hope. On Monday, she refused dialysis. She asked the ICU doctor what her chances were for recovery, and he was very honest with her. It would be a very long haul, with no promises that she would not continue to have more setbacks along the way. Afterwards, we talked for quite awhile about how she was feeling; she told me she just didn't know if she had the strength to go on. I was pretty blunt with her; I said "Mary, everyone dies. Sometimes no matter what we do, that is just what happens. You're the one lying in this bed; you are the only one who knows how much fight you have left. But whatever you decide to do, know that we here in ICU will support you 100%. If you have the fight to go on, we'll do whatever we can to help; if you decide you have had enough, we will make sure you are kept comfortable, and support you in that way. This is a hard conversation to have, I know."
We left it at that, and Monday the dialysis team came by; again she refused dialysis, saying she wanted to talk with her husband. The physician called him and told him about this, and then I spoke with him. We talked at length about it all, and he was pretty amazing; he knew very well what Mary was going through, was prepared for the possibility of her dying, and even though he wanted her to fight on, he was prepared to support her decision and her. When he and their daughter came in there was a meeting at Mary's bedside with the ICU doctor, and the family, and Mary, and me. The doctor told Mary that she would be dialysis dependent for the rest of her life; if she chose not to have it, she would die of renal failure fairly quickly. Mary looked at him, and said "I don't want dialysis". Her choice was made; she had decided that she was ready to die, if that was was was to happen. It was her choice, and we respected it. In cases like this, we change the focus of our care from trying to cure to making sure that the person is as comfortable as possible. Therefore, all things that do not contribute to comfort are removed: feeding tubes, heart monitor, any medications like antibiotics etc. are stopped; medications that help comfort are continued.
We also consulted the Palliative Care Team; they are wonderful in our hospital, and the support and comfort the team give to the family is so important.
At the end of Monday's shift, we anticipated that the next day we would move Mary to a private room in ICU, and let nature take its course. I was glad that I would be on again the next day. On Tuesday (yesterday!) I was talking to our Social Worker, who is a great advocate for the patients, and a pretty amazing person when it comes to getting things done. She asked if Mary had any last wishes: did she want to die at home, for example? I have to admit I hadn't thought about that at all, but we have arranged that twice in the last few years. L. went and asked Mary and her husband if that would be something they would want; and yes, yes, Mary wanted to go home. So, yesterday afternoon, with the participation of the entire team, it was arranged. Palliative Care was there for backup, a special hospice nurse was hired from a private agency by the family, the Ambulance was booked, and the logistics were worked out. At nine o'clock this morning, the ambulance would pick Mary up, along with one of our Respiratory Therapists to look after the ventilator, and one of our ICU nurses to look after Mary, and she would go home. The family would be waiting for her, her bed prepared with her favourite pillows and blankets, and she would have time to spend with her children and grandchildren; then the RT would take her off the ventilator, the RN would give her medication to alleviate any feelings of discomfort, and the Hospice RN would take over Mary's care. Mary would die at home, in the loving arms of her family and friends.
(Unfortunately, I was not going to be at work today, so another nurse volunteered to be the one going with Mary) Mary's daughter told me that she was looking at this as a gift: in Mary's entire stay with us in ICU, Mary had so little control over what happened, and now, in this at the end, she had taken control; she had decided it was her time, and I think it empowered her in a way.
One of the Palliative Care physicians has written about caring for the dying, and he says that what a dying person wants most is to have the fact that he or she is in fact dying acknowledged; to know that it is alright to talk about death, and to be assured that they will be kept comfortable, and that they will not be alone.
I really hope that in some way, I helped Mary accomplish this.
Yesterday afternoon, I washed Mary's hair at her request; her daughter packed up her belongings, and her husband kissed her and said, "see you tomorrow, at home".
At the end of my shift, I said goodbye to Mary. I told her I would hold her in my thoughts today, and pray for her. She smiled at me, held my hand, and I cried a little.
Wind to thy wings, Mary.
ETA: Mary's obituary was in today's paper. It said she passed away peacefully at home, with her family around her.
Mood: sad
