The right to a good death

No, this is not the title of the next Bond movie, although it sounds good. It was the title of an interesting presentation on palliative (end of life) care that I attended last Monday. The professor who delivered the guest lecture at WHO works in a German hospital and has much experience with this form of care in practice.

You only die once and you better do it right. However, many people in the world do not die in a decent way. They suffer unnecessarily because they do not have access to simple pain medication. The professor gave some horrible examples from real life. Vlad from the Ukraine tried to jump out of the window of the hospital as he could no longer stand the pain. When his mother pleaded for a higher dose, doctors at one hospital accused her of selling the medications.

The problem is that in many parts of the world opioids are considered as hard drugs and it is simply forbidden to use them or under very strict conditions. The trouble is that they work so well against pain. The therapeutic use of the opium poppy predates recorded history.

For some years, we had a good expert seconded to WHO, who was struggling to improve access to these medicines and to get them off the lists of controlled substances or on the list of essential medicines. From the point of view of drug control it is maybe understandable to restrict access, but for dying patients it can be the difference between suffering and death with dignity.

Palliative care is of course more than medicines and opioids. The definition state that palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. This can be done by the prevention and relief of suffering by means of early identification and treatment of pain and other problems: physical, psychosocial and spiritual.

Especially in lower income countries with less developed health systems and shortages of health workers, end of life care is virtually absent. And if there is no running water or electricity to keep medicines cool, it is hard to organise any form of care.

There is even a quality of death index for palliative care with UK and Australia on top. The Netherlands ranks #7 on this list. Populous countries such as India, China and Brazil can be found at the very bottom, showing how many people still die alone and/or in pain.

Many people prefer to die at home or even at a special hospice rather than in the hospital. Of course that is not always possible, and can lead to difficult choices. The example was given of a women, dying from cancer, who wanted to go home to be with her 8 year old son. The doctors in hospital knew she was abused by her husband, even in her present condition. However, in this case it was the patient who decided at the end and fortunately, in this example, it turned out to be the right decision.

So end of life care is a complicated and sometimes very political topic. What we will look at during the meeting later this month is mainly how to include it in long term care systems. It is important that it is integrated with primary care, dementia care, integrated care systems etc. We will not only look at the well developed settings. There will also be a representative from the African palliative care organisation.

When the meeting on Monday was in its dying seconds we were presented with some great mission statements from palliative care organisations:

1. "You must matter because you are you and you matter until the last moment of your life." Probably many people are inclined to consider themselves a burden to others when dying. This is a statement that can really give some comfort.

2. We will do what we can, not only to help you die peacefully, but also to let you live until you die. And that last title "live until you die", is another great potential Bond title. And also a great way of ending this blog. Let us try to apply it this weekend when winter will finally pass away.