The Demos report, Dying For Change, is a closely argued and important pamphlet.
For those without much time I commend the executive summary, and for those with less time, the thesis of the report is as follows.
The demographics of this country mean more people will be dying of old age every year. Such deaths are usually drawn out, complex and costly.
The good news is that much of our extended lives will be better spent…the bad news though is that we are more likely to die lonely and impersonal deaths in hospitals, hospices and care homes. Not surprisingly, two thirds of people asked in a related survey wanted to die at home.
To reverse the increasing numbers of people who will die in hospital, and to reduce the escalating end of life costs to the NHS, Demos propose some radical changes.
The least radical is to improve the way hospitals and care homes look after people who are dying.
Improving these services won’t meet people’s aspirations to die at home, nor will they reduce the costs to the NHS. So Demos put forward effective community alternatives.
The report suggests that the NHS should invest £500 million a year, only 2.5 per cent of its spending on end of life care, “to create the backbone for community services” to allow a far higher number people to die at or close to home.
These community services include:
- Creating new places for people to die close to home where they could be with friends and family;
- Strengthened family capacity to care by providing a dedicated compassionate care benefit or care leave entitlement to provide financial support to look after a dying relative;
- Creating a properly trained volunteer support network;
- Setting up dedicated 24/7 nursing support;
- Establishing dedicated end of life telephone help lines;
- Setting up a national ‘hospice at home’ service to tend those dying at home;
- Providing people with a key relationship to end of life advisers.
I can only praise a report that addresses the issues that My Last Song faces full on, and in particular the confirmation that the only way to improve how we die is by people addressing dying. As the report points out people are frightened not by death but by dying because family and many family doctors are unable to talk about it. Ignorance and fear go hand in hand, and fear is not what you should feel as you approach your end.
Which is a prompt for me to extol the virtues of the death plan which is in the My Last Song Lifebox, ready to be filled in when most convenient, and with the participation of close family and even the family doctor.
This is not another version of the Advanced Care Plans or Preferred Priorities of Care forms which concentrate on the medical care and treatment.
The My Last Song death plan instead addresses the more spiritual and existential needs of a dying person.
Who do they want to be present? What do they want to see? What do they want to hear? What do they want to smell? How do they want to be touched? How much do they want that their loved ones to know?
The death plan also enables them to be reassured their affairs are in order and that they need have no concerns about family, friends or pets.
If the patient, the family and the medical staff collaborate to fill in the death plan, it will help people leave this life as content as possible which while not something you can put a value on, is priceless.