Building systems that do not decline

Wow, we did it. After four months of intense preparations, the meeting on “building systems to address functional decline and dependence in ageing populations” has taken place. We had participants from over 30 countries. Big ones like China, India and United States and smaller exotic ones like Bhutan and Myanmar. There were representatives from WHO, OECD, EC, World Bank and various other international organisations.

What did we do? Well there were few powerpoint speeches. There are already too many meetings where people have to sit and look to an endless list of slides. So we have mainly used working sessions to fully use the expertise of the many people who work daily in elderly care, or who are involved in research in palliative care, dementia care and long term care. The few presentations we had were on care in lower income countries, on the examples of Japan and Finland and on the Interrai assessment system. We also had a very animated high level session on sustainability of long term care with a.o. deputy SG Yves Leterme from the OECD and state secretary Martin van Rijn from the Netherlands.

What did we achieve? Our plan was that in the working sessions we would identify gaps by subtracting the real situation from the ideal situation. What is the ideal model to deliver care to older people and how is it organised in reality? And next to discuss what should be done to bridge the difference. In an outcome document that we still have to finalise, we will elaborate on that and identify who is best placed to take up the different actions identified.

How we will continue? We are not ready yet and I expect the outcome document will be released somewhere in the coming two months. But we also want to foster the network we have created. It is quite exceptional to have so many international organisations actively involved in pursuing the same goal. Just like older people and systems, also our network should not decline.

This is just a first summary of the meeting. I will still be employed at WHO for the two next months for the report and follow up. Hopefully I will not decline after the meeting. After all, I am also a system, a biological one.

Kung Fu and the art of ageing

On July 20, 1973, 33 year old martial arts star Bruce Lee had a minor headache. He was offered a prescription painkiller called Equagesic. After taking the pill, he went to lie down and lapsed into a coma. He was unable to be revived. Extensive forensic pathology was done to determine the cause of his death, which was not immediately apparent. The determination was that Bruce had a hypersensitive reaction to an ingredient in the pain medication that caused a swelling of the fluid on the brain, resulting in a coma and death.

I was reminded of the sad story of the Kung Fu master after seeing another great Kung Fu movie this week. "The Grandmaster" is a Hong Kong-Chinese action drama film based on the life story of the grandmaster Ip Man. The film is directed and written by Wong Kar Wei. A lot happens in the movie, which gives also a nice insight in the Second Sino-Japanese War. During the war, Ip Man and his family descend into poverty and he loses his two daughters due to starvation. Even more tragedy happens. Gong Er, a great female Kung Fu master and a very good friend defeats his pupil, bad guy Ma San, during a spectacular fight at a train station on Christmas Eve 1940. However, Gong herself is heavily injured and loses her ability to use martial art.The film then fast-forwards to the 1952, when Ip Man and Gong Er meet each other for the last time. Gong confesses to Ip that she has romantic feelings for him right from the beginning. She dies shortly after, suffering from the injuries from the 1940 fight. As Ip man gets older, he also declines and dies.

What are the conclusions from the above? Well that even Kung Fu masters will eventually age and decline. Another fact is that bad medication can kill even the invincible. And that it costs much internal energy to stay invincible.

This week at WHO we did talk a lot about how to avoid these types of tragedies. How to keep functioning as long as possible? Or more precise how the combination of age, care and environment determines functioning of older people

We developed a new model for the meeting that will take place next week in The Hague. This model starts from the assumption that in ideal life there is no functional decline. The curve of age and functioning starts horizontal and is vertical at the end of life, indicating a sudden death when you are still perfectly functioning. That is more or less Kung Fu philosophy as I learned in the film, as you can end a fight in only two positions, horizontal and vertical. Of course our real functioning curve starts to decline much earlier when you age. The curve may be shifted to the right by adequate care, assistive devices and enabling environments. If the curve shifts to the right, the moment you cross the horizontal line of dependency will also be more to the right and that is our ultimate aim. To enjoy and remain independent as long as possible in life.

We may learn even more from Kung Fu. In the model functioning is more or less equal to health status. But functioning and health are different things. Functioning and performing on a high level requires much energy. If you are injured or not very healthy it is even harder to continue functioning on a high level as the example of Gong Er shows. She wins the fight but loses the battle. In fact it happens a lot in real life. Most burn outs happen when people have to work too hard and under too much stress for a too long time period. I am not sure how to include that in our model, but the relationship between health status and functioning is certainly worth exploring.

This week, I experienced it myself. My health status was not very good as I had a kind of flu attack. At the same time my functioning had to be sky high as it was the last week before the meeting that we organise next week in The Hague. About 10 papers were to be finalised, 80 participants to be informed, conclusions to be written etc . It really took me some life juices to do this. For a week or two this is possible, But I hope I will still be in a vertical position next week.

But let's not end so pessimistic. As Kung Fu philosophy also learns, If you always put limit on everything you do, physical or anything else, it will spread into your work and into your life. There are no limits. There are only plateaus, and you must not stay there, you must go beyond them." And another Kung Fu truth: "some functional decline can make you stronger: It's not the daily increase but daily decrease. Hack away at the unessential.”

So with these wise words I will conclude. Next week I will try to write about the outcomes of the meeting. And after these movies, I will be extra careful not to offend the participants from China, Japan, Bhutan and Thailand,

And ps: Sorry Charles, I did it again. One of my former colleagues complained that I write nice blogs but that I should do something about my addiction to movies. Cannot help it. Life is a movie.

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.

Why are older women special?

No, this is not what you think. It has nothing to do with sex but rather with the difference between the sexes.

But first about Wadjda. This week I saw the first feature film ever shot in Saudi Arabia. And perhaps even more significantly, it is the first feature written and directed by a Saudi Arabian woman, the talented Haifaa Al Mansour. Her tale is about a 12-year-old girl, Wadjda, who wants to buy a bike. In the setting of Riyadh this is very special, throwing open closed doors on women’s lives.

Much of the action takes place in Wadjda’s all-girl school, run by a wicked witch, Ms. Hussa (Ahd), who singles the girl out as a troublemaker. But then Wadjda’s suddenly converts to religion in an attempt to win the school’s annual Qu’ran contest so she can buy the bike she wants. She wins the contest, but the school gives the money to Palestine instead of a bike. The story is funny and interesting, but most of all the movie is about women in Saudi society.

The role of women in society is also something we will look at separately when considering support for older people. My colleague is writing an interesting short background paper on this topic for our meeting later this month. It includes many reasons why it is important to pay special attention to women when discussing the care for older people. Let me share a few observations that opened my eyes.

There are more older women than older men

This is something that most people already know. In most countries, women outlive men and therefore women represent a growing proportion of all older people: 53% of the “young-old” (till 75), 58% of the “old” (75-85), and 66% of the “oldest old” (over 85). These are worldwide figures and also in low and middle income countries populations are ageing (often at a more rapid rate than in high income countries). Hence, also in poor countries there are already many older women.

Women tend to be on their own at the end of their lives

Not only do women outlive men, but due to social and cultural norms in many countries, women partner with older men. This means that many women spend many years caregiving for older spouses and other relatives. This decreases the chances for women of getting caregiving support by their partners. Women who lose a partner are also less likely to repartner than men, further decreasing the chances of support. So women are often on their own, without company and without support.

Women face special health issues later in life

Although the health status of older women does not differ significantly from older men, there are some differences. Because women get older than men, they probably have more and more complex chronic diseases and end up in institutions more often. The four biggest causes of disability in older women are vision and hearing impairment, dementia and osteoarthritis. Every year, more than 2.5 million older women lose their independence through visual impairment. Dementia is another cause of disability that disproportionately impacts women.

But women have less access to care

Much of this burden could be avoided if women had access to the necessary care, particularly surgery for cataracts. Especially in lower income countries, women are sometimes simply denied access to health care, let alone long term care.

Older women also have lower financial security than older men. Although women’s educational attainments and labor force participation have increased, older women are more likely to be poor than older men. Moreover, women are less financially prepared for older age than men, are more likely to have worked part-time and spent fewer years in the workforce. These factors contribute to lower probability of coverage of long-term care in later life, especially in countries that do have employment-based insurance schemes.

Women provide most of long term care

Informal caregiving responsibilities fall more heavily on women, many of whom are older with health problems of their own. Caregiving responsibilities also come with economic costs, as caregivers often reduce or adjust their working hours to accommodate these responsibilities. The paid long-term care workforce is overwhelmingly female. Almost all nurses and home care aides in both institutional, home and community-based settings are women.

All these factors justify that we pay a bit of special attention to older women. Or in WHO terms, to give a gender perspective to care and include equity considerations.

Now going back again to the Saudi film. This movie is rather about young than old women. Still it shows that many women have to struggle hard in life, are often on their own and have to care for even young and healthy men. Not being allowed to drive a car alone, it makes sense to find a bike to escape from the other sex.