Caring for the frail, demented and dying. An interview with Muriel Gillick
Prolonging life at the expense of its quality can rob elderly people of peaceful, meaningful years, Muriel Gillick tells Les Olson.
Dr Muriel Gillick is professor of population medicine at Harvard Medical School in the United States of America (USA). She studied history at Swarthmore College, medicine at Harvard Medical School and later completed a residency in internal medicine at Boston City Hospital. She also sees patients at Harvard Vanguard Medical Associates, a multispecialty group practice in the Boston area, and at the Brigham and Women’s Hospital. The major focus of her work is caring for patients near the end of their lives, in particular helping them to obtain medical care that makes most sense to them.
Q: Ageing populations in developed countries are often mentioned as a problem, but is this an issue that developing countries need to be concerned about?
A: Very much. Today, there are about 50 million very old people – aged 80 and over – in developed countries and about 50 million in developing countries. In 40 years there will be about 120 million very old people in developed countries but 300 million in developing countries. The elderly population is growing faster than the population as a whole: at present in low- and middle-income countries there are roughly 10 people of working age (20 to 64 years) for every person aged 65 or over. By 2040 there will only be four or five.
Q: The World Health Organization (WHO) has promoted a model of ageing in which older people remain active and robust. This sounds like something everyone would think was a good idea, but you have expressed some misgivings about it. Why?
A: We must certainly do what we can to prevent illness and disability, but we must be careful that a focus on robust ageing does not lead us to neglect the frail, the demented and the dying.
Q: What are the reasons for your concerns?
A: The first is that I do not think it is possible to prevent all illness and disability. The frail elderly often suffer from a combination of multiple chronic diseases that jointly produce disability and predispose them to vulnerability in the face of acute illness. The proportion of those who are limited in their ability to care for themselves has been rising.
Even if we can make elderly people generally healthier, we will never eliminate all their health problems. In particular, we currently have no prospect of being able to alleviate or prevent one of the biggest causes of disability in the very old: dementia. The number of people living with dementia is expected to double in high-income countries over the next 40 years, and to increase fourfold in low- and middle-income countries. And even if we can keep most people healthy for most of their lives, we are all going to die. For most people that means a period of very poor health and dependency leading up to death.
My second concern is that talking about “successful ageing” – meaning robust and active old age – implies that old people who are not robust and active are “unsuccessful”. While everyone would like to be active and robust in old age, there is a risk that people who don’t achieve that will be regarded as failures and blamed for their disability. Sooner or later we will all stop being healthy, and we need to plan for that so that we can deal with it when it happens.
Q: What should care of elderly people involve?
A: In the USA it tends to mean looking for technological means to prolong life. I think that care should, instead, focus on helping people retain meaning in their lives. Treatment should be targeted at controlling symptoms, not on prolonging life, and on helping patients to maintain human relationships and personal dignity.
Q: Do you think care will differ in developing countries?
A: My fear is that as developing countries have more resources to spend on health care, they will follow the American model of technological medicine. I think that would be unfortunate. It is possible to provide, with very limited resources, care that is technically excellent and compassionate and that helps old or dying people keep meaning in their lives.
Q: Some communities appear to feel that it is important not to give up on curative treatment.
A: Yes. But there is evidence that when people everywhere understand what frailty and dementia mean as a lived experience, they have a common view of what appropriate care in those conditions involves: treatment directed primarily at controlling symptoms and maintaining relationships and personal dignity. The medical profession is one of those communities: its goal is to preserve and prolong life, and it is very difficult for doctors to accept that not all life-prolonging measures are desirable from the point of view of the patient.
One issue I get worked up about is the use of feeding tubes (tubes surgically inserted into the stomach) for patients who have difficulty eating because of advanced dementia. The evidence is overwhelming that this does no good for the patient; it neither prolongs life nor improves the quality of life by preventing pneumonia or healing pressure ulcers, for example. But it is very hard to get doctors and families to trust the evidence, because it goes against the instinct not to feed the people who depend on you.
I believe that we should not provide treatments unless they bring real benefits to patients. The choice is not between curative treatment and neglect. We can offer treatment that deals with the need for families to provide care but does not cause suffering and does not cost a lot.
Q: How important is care provided by families as opposed to professional care?
A: In the USA about 80% of all care for disabled elderly and dying people is provided by family. The figures may be higher in poorer countries. However much care families provide, they cannot provide optimal care without some professional help in certain domains such as symptom management.
Q: Are drugs for pain control an issue?
A: Certainly. Easy access to opioids – morphine and related drugs – is essential for control of pain. A lot of progress has been made in the USA by showing people that these medications do not kill patients and, when properly used near the end of life, they do not cause addiction.
Q: How do we teach people about these things?
A: Stories of real patients provide the key. Here is one. A 66 year-old engineer could no longer do complicated mathematical calculations in his head. He saw a doctor, and tests showed that he had a highly malignant brain tumour. He had weeks to live. His doctor suggested surgery and chemotherapy, although there was little chance that this would prolong his life outside hospital. He and his family chose not to have curative treatment. What mattered to him was to control symptoms, to be able to talk to his family and to leave a positive legacy. Skilfully prescribed drugs controlled his pain and prevented most of his seizures, so that he was able to spend his last weeks at home with his family and friends. He was able to die well because – and only because – he had access to good palliative care. Good palliative care is not complicated or expensive: it simply means that his care was managed by professionals who were skilled in using opioids and who appreciated the value he placed on his autonomy and legacy.
Muriel Gillick was interviewed as a guest speaker of the World Health Organization's global health history seminar series. Access the seminars online at: http://www.who.int/global_health_histories/seminars/en/