For most of human history, in all major religions, an ultimate goal of spiritual practice was accomplishing a good death. When this goal was held in common by the whole society, spiritual care could focus on the interaction between a dying person and his or her caregivers. But in contemporary Australia, where the goals of care for the dying person are largely unspecified, there is a tendency to focus more on whether the right services have been delivered than on the outcome for the person. For us, then, spiritual care must attend to social structures – that is, spiritual carers need to be concerned with contexts, settings, organisational structures, workplace relations and policies, not just with individuals. For spiritual care to focus only on supporting elderly people dying in aversive circumstances would be to narrow the scope of our practice and risk distorting its real nature as well as bringing it into disrepute. Of course spiritual care engages with and supports people in whatever circumstance they find themselves. But if that circumstance is a consequence of injustice, or incompetence, or misinformation, or just laziness, spiritual care needs to advocate for justice, or fairness. Spiritual care opens our eyes to what it is that matters in each situation we encounter. It is linked with a capacity to make good decisions. And if elderly people in Australia today are to have good deaths, a lot of bad decisions will need to be overturned, and many good decisions made, at all levels of our society.
Bad decisions have been graphically illustrated in recent media stories demonstrating the failures of our aged care system. Commentators have pointed to staffing ratios inadequate even for performing the basic tasks of personal care, let alone for providing some human companionship in the process. Low levels of expertise amongst staff rostered on in some facilities also cause concern, as do the deficiencies in the accountability and accreditation systems.
The discussion that has been cast mostly as the issue of aged care might also, however, be framed as concerning end of life care. The majority of those admitted to an aged care facility nowadays are in their last year of life. In some respects, we could see the residential aged care facility of today as like the hospices of the ‘seventies and ‘eighties; although the ethos of care in today’s aged care facilities is rather different, and the hospice approach with its extensive reliance on volunteers may be impossible to replicate in a privatised care system.
What we know about the experience for most people at the end of their lives contrasts with the ‘good death’ advocated by the hospice movement. Still a significant proportion of elderly people, including those who reside in aged care facilities, die in hospital. Systematic literature reviews led by Magnolia Cardona-Morrell of The Simpson Centre for Health Services Research, University of New South Wales, have charted end of life experiences for hospitalised older people that are less than desirable for all concerned. She and her colleagues find that inappropriate hospitalisations, from both nursing homes and the community, are largely due to non-clinical factors: to lack of alternative sites of care or lack of preventive action by primary care providers; to family insistence; or to admissions that are simply too late to be of benefit. The review team, in an associated piece of work, also found that on average at least one-third of hospitalized elderly patients received ‘non-beneficial treatments’, including chemotherapy or radiotherapy, transfusions, and other ineffective treatments, while most of those lacking a Not For Resuscitation order also experienced resuscitation attempts. Almost half of the hospital deaths took place in intensive care. Clearly the experience of dying for many elderly people is much worse than it could be, while the costs to the health system from inappropriate admissions, inappropriate treatment, and inappropriate place of death, are considerable.
When your journey lands you at a destination you neither expected nor wanted it makes sense to look for where you took a wrong turning. This, in a nutshell, is a public health approach: if you don’t want people entering a particular scenario, identify what needs to be changed so that many, or most, can avoid it. Clearly the end of life experience for many might be better if more appropriate decisions about treatment are made in hospital settings. But it would be even better if many elderly people didn’t find themselves in hospital in the first place.
Clinical decision-making is something that can be improved, and strategies such as Advance Care Planning have been developed with this in mind. (The actual effectiveness of this strategy is a discussion that can be had another time.) But the problem of inappropriate admissions cannot be solved within the health system. It challenges us to be communities who provide a range of alternatives for end of life care, all of them supported by people – family members, friends, neighbours, professionals, volunteers – already equipped with, or in the process of acquiring, skills appropriate to the circumstance. Spiritual carers can have a key role in community transformation, advocating for change, pointing to possibilities, coaching people in the skills required. The compassionate communities movement is one expression of how this might come about. And as communities become partners in end of life care, we should increasingly be able to focus on what is going right, not just what is going wrong.
Cardona-Morrell M, Kim JCH, Turner RM, Anstey M, Mitchell IA, Hillman K (2016). Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem. International Journal for Quality on Health Care 28(4), 456-469.
Cardona-Morrell M, Kim JCH, Brabrand M, Gallego-Luxan B, Hillman K (2017). What is inappropriate hospital use for elderly people near the end of life? European Journal of Internal Medicine 42, 39-50.