In her pertinent and superbly crafted essay, Karen Hitchcock writes: “In my experience, most families and patients do not want to go home once dying begins. If they do, the services are terribly sparse.”
My experience has been different. Twenty-seven years of caring for the dying, in acute public or private hospital, hospice, aged-care institution or at home, has left me in no doubt that, when it can be managed, home is the best place in which to die, and is commonly appreciated as such by many patients and families. True, services to support a home death may be sparse, but it is important not to overestimate what a home death requires, nor to underestimate what can be achieved with quite modest intervention.
Walking the wards of major hospitals as a palliative care specialist, I met practitioners of other specialties and was invited to join in decisions about ceasing active treatment. This is often a difficult time for both specialist and patient; through expert care, things had been going well – with relief of discomfort, regression of disease and hope of a cure or a lasting remission – but now there is disappointment and, for the patient, a feeling of despair. My task is to explore, with patient and family, options for the time ahead, one of which may be home care.
That requires, first and foremost, the presence of a competent and willing family member (“informal carer” is the current jargon), as well as readily available skilled assistance and advice, delivered by telephone and in person.
This assistance and advice is best provided by a palliative care nurse calling daily to assist the informal carer with necessary hygiene, such as a wash in bed, and to review nursing routine and medications. The nurse can arrange equipment for home care, such as a walking frame, hospital bed, shower chair or commode. A doctor familiar with the home scene – a family GP or a palliative care physician like myself – will order the necessary medications, setting a range for each prescription within which the nurse or family can adjust doses, including any delivered by continuous subcutaneous infusion. Further advice is available by phone at all times, and a medical home visit can be made if necessary.
Palliative care is often portrayed as teamwork, and palliative care units have been commended for the comprehensive range of skills they offer to patients and families facing a terminal illness. If the responsibility for home care falls on a single family member, a frail spouse, more assistance will be needed. Sometimes a son or daughter can come for a time (even from interstate), or there is opportunity to buy help. Some charities and agencies have provision for night support to allow the family carer a regular full night’s rest. Private nurse agencies can offer flexible shifts of up to twenty-four hours per day; this can cost as much as several thousand dollars a week, but the time of dying may be only days or a couple of weeks, and a supportive family may find the means.
A well-managed home death is a powerful experience, one for which families consistently express great satisfaction and thanks. And that experience makes an important contribution to the euthanasia debate. As a former health minister, Tanya Plibersek, recently stated, commenting on the death of her father: “For the majority of people, if you get pain relief right and support them to stay in their own home, they won’t choose voluntary euthanasia.”
Before the time of dying, there is commonly a long period of care. According to 2015 statistics from the Australian Institute of Health and Welfare, half of our aged population have begun to access some form of health care four years before death. Dementia is now listed as the second-most common diagnosis leading to death, and is sometimes likened to dying by degrees over a period of years.
Australian health care is a mess. Karen Hitchcock calls it a system of tacked-together fragments, communicating poorly with each other. Its finances are in the hands of non-medical administrators owning separate responsibilities at various levels, and they focus on what can be counted, setting rules for what is allowed within balanced budgets. This infuriates clinicians who are trying to provide whatever is best for their patients, and who recognise “non-financial values” in health care that resist costing.
It is a situation for which there are no easy answers. There is an easy rhetoric, of course, illustrated in the recent statement of principles by the Aged Care Sector Committee of the Department of Social Services. The principles affirm consumer choice, the central importance of informal carers, and that care should be affordable, innovative, responsive to need and universally available. It is also proposed that care be “contestable,” meaning, I suppose, that the provision of care will be open to tender and competition, and represent value for money.
Formidable difficulties attend the implementation of those principles. What can be offered to an individual may depend on whether a “care package” is funded by the Commonwealth, the state or territory, or a private health fund; whether care is delivered in hospital or in a community setting of family medical practice, specialist clinic or aged-care facility; whether private insurance is available and with which health fund (none are great in helping with community care); and whether in an urban or rural location.
It is not uncommon for an older person with several chronic diseases – cardiac or respiratory conditions, diabetes, arthritis – to track around specialist clinics collecting opinions and prescriptions while complaining, “I don’t know who is looking after me.” It ought to be the GP, perhaps, but many GPs do not visit homes these days, nor are they attending aged-care facilities as much as is needed, and are constrained by the round of ten-minute consultations which is best for their practice’s overheads.
At one end of the spectrum of care is the impressive technology of the operating theatre and intensive care unit, which can replace organs and maintain life with extracorporeal oxygenation or circulation. With this sophistication, even elderly individuals facing imminent death from organ failure may be pulled back from the brink. Such an intervention may cost tens – perhaps hundreds – of thousands of dollars. So what is the life of an old person worth? What is it worth for a person facing death to have life extended by a month or two? These are questions frequently approached but rarely resolved, and if met with strict guidelines will arouse much disquiet in many situations.
Our culture has accepted a basic philosophy of growth; it invites us to seek more – more money, speed, power, life. Families are primed to embrace whatever technology can offer, even if it helps for only a brief time and at great cost. Who can say this is wrong? A short time of survival for a loved one may bring great cheer to a family. And if it seemed, looking back, to cause more hospitalisation and discomfort, still, the loved one “was a fighter” and “we did our best.”
Not uncommonly, patients themselves decide they wish to cease futile treatment, and we (doctors, nurses, family members) need to be ready to allow space for them to express this desire. Minister Plibersek again: “I was able to respect his decision to refuse further treatment … because he had told me so clearly that when the time came, I had to let him go.”
Prognosis is more art than science. When I am asked, “How long?” I reply that I do not guess, because I am always wrong, but suggest that it will become clearer as we proceed, and that our best approach will be to make the remaining time as comfortable and meaningful as possible. Each individual is different; there are no right answers. For the physician and care team it means maintaining regular oversight throughout the final journey.
My own octogenarian status makes me increasingly interested in “healthy ageing” with regular exercise to maintain mobility, intellectual stimulus to ward off dementia, social interaction to refresh personality. But unforeseen crises will occur. The current push for writing advanced care directives calls for each of us to be as specific as possible about the kind of care we will expect if facing major deterioration and inability to speak for ourselves. Such directives carry authority, but they are necessarily general and tentative, and should be just one component of a plan, shared with family, to chart a way through the potential deteriorations and isolations of old age. It is complex and uncharted country for each individual, difficult to travel alone. It needs context and help, but where to find it?
Where, in the complex mix of health care, is there ready access to sensible advice appropriate to individual needs and hopes? Not, I think, the 24-hour helpline, nor, always, the GP, whose willingness and ability to guide oldies through our care system is not what it once was. It is not the large hospital, either, focused on its own prowess and staffed by doctors who have worked only in hospitals and have little awareness of community health.
Aged-care facilities could fulfil a major role if they were encouraged to expand, serving their local elderly communities with comprehensive care and becoming, in effect, community hubs for such care. A hub will house a multidisciplinary medical practice, not as a way of further medicalising the inevitable shift towards death, but to give necessary support to all others who offer care in the local community. It will encourage healthy ageing (a gym, a pool, meeting rooms, teaching areas). It will support care in-house and also at home, offering early intervention and respite for episodes of deterioration, maintaining regular review of medications (many oldies are on far too many) and of advanced care directives. Specialists will be encouraged to hold regular clinics at the hub and enlarge their myopic focus; the response to complex crises will be coordinated. Continuing oversight and appropriate intervention will reduce referrals to hospital, and encourage dementia care and palliative care (including in the final days) in the home.
Such a hub will be “owned” by the local community, drawing on the support of council, service clubs, churches and schools. They will be proud of their hub, raise funds for it and volunteer to support its many activities. Staff will want to work in it; students will be pleased to learn in it; older persons in the community will be glad to be part of its activities and ready to accept care there when it becomes necessary.
Australia’s care of the aged needs a national summit, pulling in the disparate authorities and agencies. The aim will be to establish consensus and clarify a vision of how aged care might be made more cooperative, integrated, responsive and person-centred. That shared vision can guide and encourage new initiatives like the development of community hubs, and suspend redundant old ones. It will need to enter areas as diverse as political oversight, financial responsibility, health-force training, institutional architecture and deployment of staff, money and resources. To reach that consensus will not be easy, but its need becomes daily more urgent.
This is a reply to Karen Hitchcocks Quarterly Essay, Dear Life: On caring for the elderly. To read the full essay, login, subscribe, or buy the book.
ALSO FROM QUARTERLY ESSAY