My father, who died on 4/10/2014, had terminal mesothelioma, (mesothelioma is a type of cancer caused by asbestos, which affects the lungs). He very much wanted to die at home, and was assured by the health system that he would be given the support he needed to be able to, and was also told that they’d make sure he didn’t suffer at the end. However, he suffered greatly in the last week of his life, after being neglected by North Manchester General Hospital, Macmillan Nurses, the district nurse, and the ambulance service, and after being traumatised by the crisis team, and treated without compassion by his GP. My mother and I, (his carers), are convinced that the atrociously unfeeling and unprofessional ways he was treated, were what caused him to take a sudden unexpected turn for the worst, which in turn lead to him dying in hospital, (where we’d promised him we wouldn’t take him, leaving us with guilt issues).
What happened in the last week of his life was that Father developed severe breathing problems, and after seeing a doctor at home 6 days before he died, agreed to go into hospital, only in the understanding that while he was there he could likely be sorted out with oxygen to die at home. After oxygen was delivered to our home, (I lived with my father), he was released after a couple of days on 30th September, being brought home by ambulance at past 11 o’clock at night. There were no medical notes with him on his release, for me and my mother and his GP to refer to as to his care, (and he also was released in a short-sleeved top on a cold night – at past 11 pm). The ambulance people also insisted upon him walking upstairs to his bedroom, which was extremely difficult and painful for him to do, and was most distressing for us to have to watch, and I cannot understand why he wasn’t taken there by stretcher.
My father’s GP spent the next day trying to get hold of his medical notes, without success; these never were located. On this day, 1st Oct, Dad was visited by a whole battery of people in quick succession; his GP, (alongside several phone calls from her trying to find out what had happened to him and his notes), the district nurse, someone delivering a medical mattress, and a couple of people from Crisis Team at Charlestown Medical Centre, Manchester, plus a group of people they sent for. So, we were bombarded in quick and heavy succession with numerous people, (mostly trying to sort out home care for my father), who were moving about everywhere in our house, and this in itself was obviously difficult for a very ill man to cope with, but, what really was a shocking and severe trauma for him, (and for both me and my mother, Father’s carers), was when the crisis team people from Charlestown came. These came – unasked for by us – as the last of the visitors that day. They included a social worker, when my mother had specifically said previously we didn’t want any help from Social Services. Now, my mother and I had worked very hard for a couple of days, to get my father’s bedroom ready for his dying times – as he wanted to die in that room – including, getting rid of the double bed in it, and buying and setting up two single beds on our own, with the second bed to be where we could briefly lie and doze while we were taking turns to care for him. The crisis team said they had come to arrange about bringing a special medical bed to our home, (which the district nurse, had said he would arrange), but they quickly stressed that they had very little time to talk to us about how best to set it up in the house. They then said, after a very rushed inspection of the house, that the only thing they could do was set it up in our front sitting room downstairs, because – in answer to our questions – they couldn’t arrange for either of the two beds in our father’s bedroom, or any other furniture there, to be removed, so that the medical bed could be put there. They said we had a choice of accepting the medical bed downstairs in the front room, the next day, in whatever way they arranged it, or nothing. We were put under pressure in this way to quickly accept or not. We were very unhappy with the decision, as my father wanted to die in his own bedroom, and there was also nowhere in the front downstairs room for me and my mother to rest for short snatches while we took it in turns to care for my father, when we’d scarcely slept for days. However, we’d been told the medical bed would help my father to breathe easier, so we reluctantly agreed to the proposal. My father, being in a very poor medical condition, including a bad psychological state, was very strained by the presence of these visitors after all the visitors that day, by the pressure to make a decision, and, by how the crisis team talked in front of him without any consideration for his condition. This obviously made him very aware of his physical weakness, (he later said to us at several times, very agitated, “I’m not a paraplegic you know – why were you talking to those people as if I can do nothing for myself!); and though, he was obviously very weak and in pain, and he was characteristically such a polite man, after seeming increasingly distressed he flung his arms up and shouted loudly at them, “Will you go away! I’ve had enough of all this! All these people!”
The next day, the Crisis Team arrived with the bed. To get the front sitting room ready for the bed meant that we’d had to move lots of furniture and belongings from it into the middle sitting room, which since we had no time to sort out, left the middle room extremely untidy and unusable for sitting in. It felt like my parents’ beautiful home had been wrecked. Worst than that, though, the front room was a coldly draughty room with – as said – nowhere possible for us to have any brief sleep while my father slept, when my mother and I had both only had about 2 hours sleep in the last two days and were nearly dropping on our feet. It was also very traumatic for my father to walk downstairs to the bed, which he could scarcely do even with much assistance but was urged into doing by the team. My father spoke of how he hated being in the front sitting room, and was upset and concerned to overhear that we strongly disliked the crisis team.
Previously on the day before, the district nurse had offered my mother and me carers who would come in to wash and dress my father twice a day. My mother refused this as we had no problem in washing and dressing our father, but what we really needed was someone to sit with him sometimes at night, as there was lately often a need for us both to take care of him simultaneously, (as he had fallen out of bed, and needed lifting up upon his pillows often), and so we were greatly missing out on sleep, and were increasingly exhausted . We were told we might be able to get a Macmillan nurse to be a sitter in about 6 weeks’ time. My father was in a lot of distress at this time, (and unto his death), due to his toileting needs, as most of the time he felt too weak to leave the bed for the commode, so he started to refuse liquids and foods in order to have less need for the loo – he was terrified of losing control of his bladder, and was very distressed at doing so several times; it seemed like he needed a catheter, but we were unable to get hold of any Macmillan Nurses to ask about that or anything else, despite, repeated phone calls to them; and in fact, throughout the whole of my father’s illness from diagnosis in March 2014, we were never able to get through by phone to a Macmillan Nurse for any advice over his condition, at any time whatsoever. We were very concerned about a cough he had constantly from leaving hospital, but of course had no Macmillan Nurse to ask for advice over this or for over the fact that he seemed disorientated a lot of the time. Dad’s GP, when she came to see him on the day after he was released from North Manchester General Hospital for home oxygen treatment, told us that his condition was deteriorating faster than expected, and she said he may have only a couple of weeks, or a few months left; this was the only information we received at this time on Dad’s condition. However, she greatly upset my father that day asking if he wanted to be resuscitated if his heart stopped, and recommending against it – Dad had never really accepted the terminal diagnosis, and was having attention given to him by an occupational therapist due to his extreme fear of and distress around the reality of his dying, and, after telling his GP he still had hope of getting better, he repeatedly told us that he wanted to be resuscitated if his heart stopped, and to remember that he hadn’t signed anything to say he didn’t want resuscitation. In this way, Dad was upset, stressed and agitated by the GP.
When my mother brought up with the GP and the district nurse, concerns over my father’s cough and inability to bring up phlegm, they did not say anything in reply. As these people are strangers to us, we didn’t know what they meant by this – if it was that there could be nothing done about this cough as it was part of our father dying, we needed to be told that directly, so we would be properly and decently informed, rather than wondering if their silence was due to an uncaring unwillingness to help Dad.
In the hospital and at home, my father was told to take a certain medicine if he was in pain, but despite suffering greatly from breathlessness and his cough, he didn’t take this medicine because he considered breathlessness and a cough to be not the same as pain, which makes sense to us. So, he suffered from a lot of distress over his breathlessness and coughing over his last few days, (he was coughing up blood at one point), as well as his periods of disorientation. He also fell out of bed twice while disorientated and distressed, (please see below).
The medical bed had been placed up against a wall and heavy furniture, so that there was only access to it at one side. My father got disorientated and distressed after he was place in the bed, and kept slipping down from his pillows so that his legs were bent and he was too far down on the mattress; struggling to breathe, he begged us constantly to drag him back up the mattress and onto the higher pillows, but the design of the bed made only inadequate improvements to his position possible as Mother and I couldn’t each take hold of him beneath an arm to drag him up due to the bed’s position decided on and given by the crisis team. We were given no instructions on how to cope with the bed, and were not strong enough physically to move it or anything else in the room ourselves.
The first time Dad fell out of bed, was the day/night after he was released, on Oct 1st, when he was on a medical mattress. The next day was when the medical bed arrived, and we told the district nurse how Dad had fallen out of bed the night before, and how we’d only got him back to bed with great difficulty due to how hard he found it to sit up and stand. The medical bed we received, had no sides to it – the district nurse said he’d bring some later. Terrified that Dad would fall out of bed again, on her turn taking care of him my mother pulled up a chair right beside the medical bed to keep my father in, (so, even if there had been another bed in the room, she couldn’t have lain down on it occasionally for some rest); nevertheless, my mother had to take loo breaks unavoidably and when she’d only briefly been missing due to one, my father, in his struggling disorientation, fell out of bed onto the floor.
My father was too weak to get up off the floor, and my mother and I weren’t strong enough to lift him. So, we rung for an ambulance. However, it was over two hours before the ambulance arrived, even though we repeatedly rung them and stressed the situation and the urgency. All of the time my father needed propping up higher to breathe and was begging us to lift him up.
Eventually, the ambulance arrived and the paramedics lifted my father up and got him back to bed.
A few hours after this, he was worse regarding breathing, responsiveness and so on, and so we rung for a doctor, who came to see my father and said that Father wasn’t getting sufficient oxygen and needed hospital treatment to get relief from this, and that Dad’s lack of oxygen to his brain prevented him from having the ability to make an informed decision about going to hospital or not, and that Dad would probably choose to go to hospital at the present time if he was able to make an informed decision. We had promised Father we wouldn’t take him to hospital to die, but over the last few hours he’d also repeatedly been begging us to lift him higher up and had shouted “Help me!” – which was not what he had expected from dying at home, as he’d been told he would be made comfortable – so, we decided the doctor was probably right. So, we went with Father in the emergency ambulance to hospital, where he died within a couple of hours without regaining consciousness he lost just before going into the ambulance.
Regarding all of the above, I would say that my father was treated with medical neglect, and with a lack of compassion during his final days, that he was let down or lied to regarding how he was told his last days would progress – at home, and with aids to make him comfortable – and that, especially, the so-called help he received from the crisis team at Charlestown Medical Centre regarding the medical bed was much worse than useless – it was an assault – a psychological assault, and something which added to the burdens on the family. Both Dad’s GP and the last doctor who visited him at home said he’d taken a sudden turn for the worst, and, as my father ‘s health throughout his life was always affected by his emotional state, we feel the way he was treated was the cause of this sudden turn for the worst, which killed him.
I have been left traumatised by how much distress my father was in before he died, and have flashbacks, especially to during the over two hour wait for the ambulance when I kneeled by the floor besides him holding his hand, (because my mother, at 82, was not nimble enough to get down on her knees), while he called to us again and again, “Lift me up!”, when we were not strong enough to. I am also wracked with guilt at how he died in hospital, when we assured him so many times in his last few days he would die at home. I have been on medication to cope since the death, (even though normally I’m afraid of psycho-active and addictive medications, and don’t take them even in extremis).
I would like to warn other people in my area that if you are expecting compassion and sensitivity from the medical system’s home care services for your dying loved one, it’s so likely you will not receive that. I would also like for the health services to be honest about how little they have to offer, so that patients unsatisfied with what’s on offer can possibly make alternative arrangements. My mother and I would have asked for help from relatives and friends if we had known what was really on offer. As it was, some relatives were even away on holiday overseas , as they thought they’d left us with support arranged.
One final point; only after the death were we told that the medical bed wouldn’t be collected for a week after the death. I think people should be told if a medical bed isn’t going to be collected promptly upon the death, because of possible arrangements they may wish to make as regards home care for the deceased. Also; the presence of the bed in our home for days after the death provoked anxiety attacks in me whenever I saw it.