The reason for the interview, which you can listen to here, was to talk about a very topical conversation which has been taking place following Richard Smith’s blog in The BMJ. His blog which says that cancer is the best way to die has created a lot of conversation and a lot of media coverage.
In our experience, it’s not the condition that dictates whether someone has a “good death,” but how you die that is important. Focusing on the condition inhibits personalisation and informed choice for patients and their families. Instead, we work closely to find out what the most important elements of end of life care are for them. We think that a good death is all about coordinated, personalised, and compassionate care, where the dying person and their loved ones have coordinated access to the support services that they need and want 24/7.
Research that we carried out, entitled “A time and a place,” shows that the two main factors that are most important to people when they are dying are:
- Being free from pain and discomfort (78% of people surveyed)
- Being surrounded by their loved ones (71%)
This was followed by:
- Having privacy and dignity (53%)
- Being in familiar surroundings (45%)
- Being in a calm and peaceful atmosphere (45%)
Fulfilling the above as much as possible in line with patients’ needs and preferences is what palliative care is all about. It’s about making someone as comfortable as possible at the end of life, no matter what the condition, through pain and symptom management—whilst also providing psychological, social, emotional, and spiritual support to the individual as well as their carers and family.
For us at Sue Ryder, a “good death” means delivering this holistic approach as soon as possible. The earlier we reach individuals who have been diagnosed as being at the end of life, the sooner we can help to improve their quality of life. “End of life” can be days or weeks, but it can also mean months and years. This means inpatient support is not all that patients’ need and our day hospice services and community nurse specialists mean that we can now deliver more support to more people where they want it and help them to come to terms with and manage their condition before they are at that final stage.
We are pleased that dying is being talked about as we don’t discuss it much in detail as a society and a country. When we ignore something we fail to shine a spotlight on it to improve it. It is omitted from many public debates, and remains one of the last social taboos.
With huge pressure on health and social care services it is important that the needs of dying people are not forgotten and equally, that those who care for them are properly supported too.
We firmly believe that people who are dying, their carers, and their families should be able to access the care they want, when they want. Unfortunately, many areas of the country simply don’t have the services in place to make this ambition a reality.
Our research shows a staggering 92% of areas lack appropriate 24/7 end of life support services, and this lack of provision leaves people scared, alone, and desperate for help during times of need. After all dying doesn’t work 9 to 5 , so why do support services?
Improving the quality and availability of 24/7 coordinated end of life care and support services is essential to achieving a good death and with the number of deaths in the UK expected to rise by 17% by 2030—and hospitals already struggling to cope with the demand—the shortfall in end of life care services is only set to increase.
Offering access to 24/7 coordination, support, and advice at the end of life is what our General Election campaign, “Dying doesn’t work 9-5,” is all about. We are calling on everyone to join our campaign to ensure the lack of comprehensive 24/7 expert support services is urgently addressed.
If you believe those who are dying and their carers should have access to 24/7 care and support, visit www.sueryder.org/not9to5 and sign our petition.
Mike Smeeton is director of health and social care at Sue Ryder.
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: none.