Human mortality remains at 100 percent; we all eventually die. Ideally, we should all be well informed on end of life choices, and how we die should be in our own control.
Death is an emotive topic and it is one that too few of us are willing to talk about. Understandably, even many doctors and nurses find end of life decisions hard to talk about.
Previously many of the illnesses people died of meant individuals had a short period of evident decline before death. Medical advancements meaning that people live for longer have resulted in many individuals experiencing a much longer period of gradual decline which is much harder to manage. But these changes should also mean that we have more time to discuss our wishes.
But too often this doesn’t happen and when relatives, loved ones, and doctors are unaware of an individual’s preferences, they may make decisions about care that the dying person does not want.
The lack of discussion creates significant ignorance and misunderstanding and results in too many of us not having our wishes respected at the end of our lives. Over 70% of people would prefer to die at home but 60% die in hospital. Yet 40% of end of life care patients have no medical need to be in hospital.
There are things we can do to ensure that we and our families are better prepared for our end of lives. Advanced Care Planning, Advanced Statement of Wishes, Advanced Decisions and Lasting Power of Attorney are all useful tools. But how can we ensure that these tools are better used?
What needs to happen now?
Most of us are unaware of how best to support a person who is close to death. This can result in those nearing death feeling isolated, distressed or frightened. Policy makers should ensure that there is an adequate provision of advice and support to help people plan for end of life. Family discussions need to happen early and be ongoing. The Neuberger Report emphasised the importance of training, education and good communication with the whole family.
Policy makers and professionals should encourage all of us to make advance decisions and LPAs.
There is often a failure of doctors at the end of life to fully understand the law, and lawyers often do not understand medicine. There is a need for increased professional education for both lawyers and doctors and schemes to promote greater public awareness regarding end of life issues. Improving the training of doctors and lawyers should be a priority as both need each other’s perspectives on this issue.
And finally, policymakers should ensure that there are no unnecessary barriers to data sharing between health and Social Care services and the family.
Blog based on evidence from “End of Life Decisions: the information we need on the conversation that no one wants to have…” Available at http://www.ilcuk.org.uk/index.php/publications/publication_details/understanding_retirement_journeys_expectations_vs_reality
To read more about Advanced Statements of Wishes and Living Wills, read Professor David Metz guest blog at http://blog.ilcuk.org.uk/2016/01/07/guest-blog-david-metz-new-website-launched-to-help-families-face-end-of-life-decisions/