One parent has cancer, and has been on the Liverpool Care Pathway for weeks. She and her family have received excellent care and support, which has focused on keeping her comfortable and offering emotional and practical support to her and her loved ones.
Of course they are all finding this period difficult, but my friend told me that the team caring for his Mum has enabled the family to find pleasure in their remaining time together. She is comfortable and able to satisfy herself that she is attending to things that are important to her, while her family are reassured that any distressing symptoms will be addressed promptly by professionals who understand end-of-life care.
My other friend’s Dad has advanced dementia and is now frail and declining before our eyes. He is in a nursing care home yet he has been taken to A&E twice in the past couple of months, and then admitted to hospital where he has had arterial blood gas analysis and aggressive antibiotic treatment which was distressing for him and therefore his family. After the first trip to A&E my friend asked the home not to take him in again. She understands that he is dying, and that heroic interventions simply prolong a life that is devoid of any pleasure, yet he was taken in a second time and the process was repeated causing the same levels of distress to all concerned.
These two situations reminded me of a paper at last week’s RCN Research conference, in which Karen Waters reported on a study of the end-of-life care received by patients with dementia. Like my friend’s Dad, 78% of her retrospective sample received burdensome interventions.
Like my first friend’s Mum, many people with cancer or other diseases that are recognised as being potentially terminal receive excellent end-of-life care that gives them both physical and emotional comfort and supports their family. No one tries to “save” them because it is accepted that this is both inappropriate and impossible. Shouldn’t those who are simply reaching the end of their life be able to expect the same?
Some details have been changed to protect confidentiality.