Grown up conversation quality of life/length of life

The grown up conversation we need is about quality of life as opposed to length of life. Isolation is a terrible thing for people and in lockdown, it is causing considerable distress. We need to trust people to be able to make the decisions which are best for them. Many older people are philosophical and realise that they have to die of something,. They are already past the age they expected to live, have survived heart  attacks, strokes etc which would have killed them in the past and they want to live to the end not exist in a living death in confinement. Care homes now cannot provide live entertainment and this affects both clients and entertainers very badly. I am a care home entertainer and, before Covid 19, I have seen stroke and dementia patients sing with me and one man, who hardly spoke,  even recited the complete "Tam O Shanter" with me. There is no substitute for live entertainment and I am heartbroken to think of care home residents suffering from loss of them and the loss of visitors of all kinds. This is not the end of life any of us want or deserve. The NHS will not be overstretched if older people wherever they live, have been allowed to sign  "do not resuscitate" forms and consented that, if they fall ill with Covid 19, nothing will be done to save their lives, only to make them as comfortable as possible where they are. To this end, measures would be put in place to ensure they have access to food and family members would be provided with appropriate PPE so they can visit and care for them if that was agreed. Families often find it hard to discuss their views on illness and death but Covid 19 provides an opportunity to begin these difficult discussions and I believe that we should take it.

Why the contribution is important

In Scotland and other civilised countries, there is a right to life but there must also be a right to die in the manner that you choose and the right to choose how to live your life towards the end. My elderly parents are suffering greatly as I cannot visit them and support from vital health care and social workers is heavily restricted to emergencies only. This has led to my mother being hospitalised once during lockdown. My mother cannot hear well enough to chat on the phone and they are unable to use the internet. My mother's medication requires her to be monitored by psychiatric nurses who are not, currently, able to. This situation is becoming intolerable and I believe that health care staff should engage with the Scottish Government to produce a strategy which balances quality of life against length of life to reduce suffering.

by CarrieT on May 09, 2020 at 03:39PM

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Comments

  • Posted by Stephen666 May 09, 2020 at 16:06

    Unfortunately it's not possible yet to ensure a visit to one will not kill another so visiting is out. However the points made about quality of life are relevant and outwith Covid-19, there was the "Liverpool Protocol" which was used, but then stopped, when it was needed. My mother deteriorated mentally and physically under CHC in hospital so far, that she was forced to seek fee paying care in a Care Home. The care home is full of wonderful staff, and they try to lift anyone they can. I would respectfully suggest that Covid-19 does not give an adequate opportunity to address the many social care issues that exist, but post Covid-19, absolutely.
  • Posted by JLMBD May 09, 2020 at 16:14

    Most of not all elderly people have been given the opportunity to sign a DNR already. And there should be no pressure to sign one if they don't want to. While we all have to die of something COVID-19 is a horrible way for it to happen, ask anyone who has worked in a COVID-19 ICU. Everything possible needs to be done to keep it out of care homes.
  • Posted by tammymac May 09, 2020 at 16:59

    As like many illnesses there is a huge variety in how Covid 19 affects people and I think all people should be given a choice, particularly at the end of their lives. I have a friend whose mother broke both hips in a care home and died 4 days later in hospital. There was an autopsy and it was discovered the mother had liver cancer & covid 19. She did not die of covid 19, but because she had it, that was put on her birth certificate. My friend was very upset about this. There is much fear surrounding this virus. Pre lock down, car accidents were one of the highest ways people died. People die horribly in car accidents and if we had car accidents pushed in our face every day by the media, we would not drive. We could have testing of those who come in to visit. We are going to see people dying over the next year due to the stress of this lockdown. I have said before, we are a social species and when deprived of our social connections, we can die.
  • Posted by Ro2 May 09, 2020 at 17:02

    Until you become an over-70 yourself it is hard to imagine how you would feel in that situation. So why not ask the people themselves? Although governments are not doing that, I know of one survey conducted by a retired psychologist, herself in her 70s, who lives in one of the badly-hit villages in Northern Italy. On her own initiative she approached all the old folk she could find with a short questionnaire once the lockdown began to be lifted. The outcome was that all of them would rather not have had the lockdown, and would rather have risked dying from the virus if they had been able to spend some precious time with their families. They also indicated that they never wanted to see the country's economy wrecked and millions of people suffering for many years to come for their sake . This seems to support what CarryT says. Perhaps it would be different in Scotland, but why not find out what the people we are so desperate to protect actually want? Unless we are afraid of the truth of course.
  • Posted by Elkie May 09, 2020 at 17:13

    Of course, everybody should have the right to make these decisions. But that is the problem in a care home situation, isn't it? Someone, who decided to rather not risk seeing their loved ones gets infected and dies, because someone else decided, they would rather be dead than being unable to see their family. To have truly free choice, at least those willing to accept the risk should be living with their families. So that those, willing to accept to be isolated from their families, could be better shielded in a care home environment.
  • Posted by sylviaeb May 09, 2020 at 17:59

    From time to time people enjoy themselves in a care home but it's temporary generally they are miserable want to go home actively ask and want to die. So yes end of life care sensible conversations needed especially now, DNR in itself isn't forced on anybody and is what most very old people want . My mother is in a care home and currently has a grade 4 bed sore caused by poor care, there is no grade 5 it's a wound that goes to the bone may take up to 2 years t heal if ever. SO she has to be turned every 2 hours and cannot sit up. . Then she got a mouth infection caused by poor care.. The response from GPs and the home is to medicate her to the point of semi consciousness . Quality of life zero, torture really..
  • Posted by amanda67 May 10, 2020 at 13:46

    I think its truly awful that folk aren't allowed to visit their loved ones at the end of their lives. I have heard heartbreaking stories about people who were only allowed in to see a family member when they had hours to live. By this time they can be unconscious or not recognise family. Also I have heard reports of the staff not being able to hug or have contact with the people who are dying. If they have been tested and are negative, why not? Surely this isn't right. What about the rights of the person dying ?How very sad for them. Please change this situation.
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