I’ve had a few recent encounters as well as reading on TP some concerning accounts where things have not been considered appropriately or explained properly or where there has been confusion or misunderstanding over what palliative care is and what end of life is. This last week I had a scenario at work which I won’t divulge too much, only to find palliative care had been withdrawn on an old lady who’s only other carer was her daughter in her own home. I was stunned at the story she told me, and clearly, she was suffering from carer burnout and very stressed. But this is not the first time, and it seems to me to be now commonplace where even healthcare professionals can’t see the wood for the trees, and I just wonder if it is through a significant lack of resources including funding or just blatant ignorance on the part of care providers.
Anyway, to assist anyone out there who is trying to make sense of what this all means in relation to dementia care, well it’s the same as for any other life limiting disease, the most common one people think of is cancer. The best way of thinking about palliative care and end of life is to think of a continuum with palliative care at one end and merging into end of life at the other end and in between is a period that could be years, months, weeks, or days. No one knows when end of life will be, even in those who are showing signs that end of life may be imminent there is a possibility that this stage could endure for some time. There is no definitive line to draw between palliative care and end of life care, however palliation can mean living well with a disease or dying well with a disease -at some point palliative care crosses over into end-of-life palliation.
Rather than re-write definitions here are two good definitions of palliative care and end-of-life palliation: Palliative care is an approach to care that addresses the person, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems (Source: cancer.gov). Someone can live for years while having palliative care. End of life care offers treatment and support for people who are near the end of their life. It usually starts to be offered to those who are thought to be in the last year of their life or can be accelerated if a person deteriorates in a shorter period.
Palliative care in dementia poses some problems as most people with advancing dementia cannot communicate their needs including if they are unwell unlike before or just at their end. I found Palliative Care Guidelines in Dementia 2nd Edition to be good in dealing with the difficulties in dementia palliative care and strongly recommend people read it, click on the link below:
palliative-care-guidelines-in-dementia.pdf (england.nhs.uk)
Support for carers of people with dementia remains quite poor and often seems to be a neglected area of care provision. Don’t just accept what you are first told even though you may feel shocked by the news -ask about what it all means and the best way forward for your loved one. The person with advanced dementia themselves also often is cared for by assumptive means rather than by objective palliation. When my mum took ill nearly 3 years ago, she did present as end of life and returned to the care home with an anticipatory pack of medications. Since then, she has rallied and has slowly deteriorated since with another few near misses. She is now advanced Alzheimer’s and edging ever closer to her own end of life. I ensured that mum is on a palliative dementia care pathway after conversations with her GP, the hospital, and the care home. Don’t be afraid of getting social services involved if care at home is becoming too much and consider applying for CHC funding to enable care support wherever that might be and question the professionals if you don’t agree with their assessment/ judgement.
Anyway, to assist anyone out there who is trying to make sense of what this all means in relation to dementia care, well it’s the same as for any other life limiting disease, the most common one people think of is cancer. The best way of thinking about palliative care and end of life is to think of a continuum with palliative care at one end and merging into end of life at the other end and in between is a period that could be years, months, weeks, or days. No one knows when end of life will be, even in those who are showing signs that end of life may be imminent there is a possibility that this stage could endure for some time. There is no definitive line to draw between palliative care and end of life care, however palliation can mean living well with a disease or dying well with a disease -at some point palliative care crosses over into end-of-life palliation.
Rather than re-write definitions here are two good definitions of palliative care and end-of-life palliation: Palliative care is an approach to care that addresses the person, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems (Source: cancer.gov). Someone can live for years while having palliative care. End of life care offers treatment and support for people who are near the end of their life. It usually starts to be offered to those who are thought to be in the last year of their life or can be accelerated if a person deteriorates in a shorter period.
Palliative care in dementia poses some problems as most people with advancing dementia cannot communicate their needs including if they are unwell unlike before or just at their end. I found Palliative Care Guidelines in Dementia 2nd Edition to be good in dealing with the difficulties in dementia palliative care and strongly recommend people read it, click on the link below:
palliative-care-guidelines-in-dementia.pdf (england.nhs.uk)
Support for carers of people with dementia remains quite poor and often seems to be a neglected area of care provision. Don’t just accept what you are first told even though you may feel shocked by the news -ask about what it all means and the best way forward for your loved one. The person with advanced dementia themselves also often is cared for by assumptive means rather than by objective palliation. When my mum took ill nearly 3 years ago, she did present as end of life and returned to the care home with an anticipatory pack of medications. Since then, she has rallied and has slowly deteriorated since with another few near misses. She is now advanced Alzheimer’s and edging ever closer to her own end of life. I ensured that mum is on a palliative dementia care pathway after conversations with her GP, the hospital, and the care home. Don’t be afraid of getting social services involved if care at home is becoming too much and consider applying for CHC funding to enable care support wherever that might be and question the professionals if you don’t agree with their assessment/ judgement.
