DEAR LIFE

Correspondence

Susan Ryan

If you know anyone likely to be facing death over the next few months, or at the point of moving into residential aged care, I would recommend against them reading Karen Hitchcock’s Dear Life. This caution is warranted. If they were to read it, they would be bombarded with an overwhelmingly distressing picture of poor care, careless doctors and unrelieved misery and suffering, with no available alternatives, unless they had the good fortune to be cared for by Dr Hitchcock herself.

Dr Hitchcock describes in detail a number of cases where older people have received less than optimal care in hospital, or poor care in a nursing home. I can’t challenge her experiences. It is important that she shines a light on bad practice. As a general physician in a busy hospital, she will see such cases of poor treatment and understandably they will frustrate and anger her. But this is not all there is. I am personally aware of many cases where hospital care for old people approaching death has been excellent, appropriate and appreciated by patients and families. I know of many peaceful deaths in hospitals, palliative care facilities and nursing homes. It is not all bad. All of us do not need to fear this stage of life, nor despair of receiving any comfort.

Dr Hitchcock properly draws attention to the inadequacies, which do leave too many people in worse circumstances than needs to be the case. But how is this to be remedied systemically? How do we change systems so that most of us can look forward to good and sensitive care in the final stages of our lives? It is possible. As a doctor, Hitchcock restates the inarguable case for more: more doctors for hospitals, more nurses and more hospital assistants for non-medical but important tasks, including feeding very frail individuals and keeping them company. I agree. As she implies, medical practitioners should be better trained to care for frail older people, and trained to recognise and counter ageism.

I agree as well with her challenge to the popular view that the documented massive growth in medical costs is not caused mainly by services for people in their final years. This view is an unhelpful exaggeration. An important finding in the recent Intergenerational Report was that the blowout of medical costs to revenue does not come mainly from older people receiving a lot of care as they approach death. Rather, these big expenditure increases are caused by the high cost of technologically sophisticated procedures such as MRIs, the higher costs of wages in the sector, and our higher standards of living and expectations. As more costly procedures are developed, more people of all ages want to use them. The public purse subsidises all of this.

It is a distressing fact that older people in hospital can be subjected to ageist attitudes and decisions. This is intolerable and must be changed. Ageism, an affront to human rights, is deeply rooted in our society and damages older people in all sorts of ways.

But it doesn’t start when you are ninety and rushed to hospital with a urinary-tract infection. It is closer to fifty when ageism impacts. It shuts capable people out of the workforce, and refuses them retraining to upgrade or change their skills. This discrimination leads to poverty and ill health. Manufacturers and retailers of most products and services target a market of exclusively younger people, reinforcing all the negative stereotypes about older people, and denying people realistic consumer choices about basics as well as quality-of-life goods. When our entire society views old age negatively, it is no surprise that doctors do too.

Housing that suits the needs of older people is scarce. New developments in areas convenient for community and medical facilities gain planning approval; such dwellings would in principle suit older people as they downsize, but thoughtless design and construction excludes them. Universal design is a concept waiting for implementation. It means that dwellings, community and commercial facilities should be built so that everyone can use them easily and safely, including people with mobility and other deficits from ageing or disability. Hospitals could do with a big injection of universal design too.

The provision of aged care is changing, for the better. The biggest change is that the bulk of new funded services will provide care in the home. If older people are to stay in their communities, these need to be safe, well lit, with clear signage and smooth footpaths and kerbs. Public transport becomes the necessary form of transport for older people no longer able to drive. Most of it in our big cities is not safe and accessible. In country towns it can be completely absent.

Those who can live in their community actively and with enjoyment into old age will be healthier and happier, better able to manage frailty when it arrives, and less likely to turn up as frequent visitors to emergency wards.

Those who have had the good sense to prepare an advanced care directive, setting out their wishes about limits of medical care should they lose decision-making capacity, have enhanced their own sense of security and independence. The advanced care directive should be helpful to the decision-making of medical staff, as it is to family members and close friends. I strongly support the use of advanced care directives and do not share Hitchcock’s reservations. She seems to imply a preference for a doctor’s decision replacing the patient’s documented wishes. I believe we are some time off reaching agreement about laws in Australia that would provide for euthanasia, or medically assisted death. A majority of our population is in favour of such a law. In principle, so am I. But the complexities of legalising the dying patient’s wishes while protecting frail older people from manipulation and abuse have so far proved too hard to surmount.

In the meantime, a carefully constructed directive, updated from time to time, but put in place while the author maintains decision-making capacity, is an effective way for the patient to have as much peace of mind and choice as the law currently allows. It is an important exercise of basic human rights.

What I am advocating – rather than just hoping for the rescue doctor to appear at the end – is dealing with ageism in all its forms, including in hospitals, by embedding a human rights approach in all our medical and associated services and institutions. We need to act to change systems and services so that they respect the human rights of all, including the old and frail. A human rights approach means dignity, respect and choice as far as possible, within the law. The advanced care directive, as I have noted, does this in relation to end-of-life care. So does palliative care, which provides comfort and dignity, and can be respectful of choices while accepting the circumstances of approaching death.

Our whole society should start thinking more deeply about the end of life, and about how we can change our values so that growing older leads to a time of life with its own rewards and satisfactions. The distressing picture of ageism, neglect and mistreatment presented by Dr Hitchcock is not the best we can do.

Susan Ryan