The Danish philosopher Søren Kierkegaard is known for his remark that death is an ‘uncertain certainty’; that we will die is certain, but when our death comes is another matter. Our mortality is not something typically given much consideration throughout life, particularly in youth. To paraphrase a joke Kierkegaard makes about this, we don’t accept an invitation to go out for drinks with the caveat that we shall sadly be unable to attend if we are hit by a bus on the way. As we grow older, however, the uncertain certainty of death becomes an increasingly urgent reality, and so we begin to take steps to ready ourselves and our families for the event of our death.
When considering preparation for death, the classic image is of someone managing their estate, usually by writing or updating a will. However, an element of the process just as vital as this is reflection on the manner in which one dies. If a person becomes so ill or impaired that they cannot express their preferences for treatment, these preferences can be made known and honoured by writing an ‘advanced care plan’ (ACP) beforehand. The process of drafting an ACP is by no means a standardised one, given the heavy influence of the author’s idiosyncratic or cultural values upon their content; as such, all parties relevant to the care and well-being of a patient/aged care resident engage in discussion with the person regarding their wishes. In a residential aged care context, these would include:
- Medical professionals (GPs and specialists)
- The family of the resident
- Care staff at the residential aged care facility (RACF)
In addition to the selection of a medical treatment decision maker to act as a legal proxy for the resident, ACPs also afford the option of specifying advanced care directives (ACD). The directives are of two kinds: instructional directives and values directives. The latter involves the resident specifying the cultural, spiritual, or other values which are important to them, and directs relevant medical professionals and their nominated treatment decision maker to act in accordance with these values. Instructional directives consist of the explicit permission or refusal to engage in certain types of medical intervention should the author become incapacitated, and are considered legally binding upon medical professionals.
Possibly the most well-known type of instructional directive is a DNR (do-not-resuscitate) or DNAR (do-not-attempt-resuscitation) order. In essence, a DNR is an order not to carry out CPR upon a person if their heart stops beating or if they cease breathing. In an aged care context, DNRs are binding upon both medical professionals and care staff; performing CPR upon a person with a DNR may be regarded as a kind of battery (or, as Will Cairns has written in a recent article, as ‘grievous bodily harm’). Whilst a resident authorising a DNR may be interpreted as a sign that they wish to die, this is not necessarily the case. In most instances, the desire for a DNR flows from a frank acknowledgment of the potential pain and health complications that CPR can cause in someone approaching the end of life. As such, the desire expressed is typically not to hasten death but to spend the rest of their lives in relative peace and comfort.
The issuance of a DNR order as part of ACP practice may indicate a shift in treatment focus to a ‘palliative approach’ (that is, one in which the chief objective is the management of symptoms and the minimisation of suffering rather than seeking cures), particularly as it relates to complications in the aging process. While much palliative work is performed by GPs and medical specialists, it falls to care workers to provide relief more broadly, both in the ‘day to day’ management of symptoms and in the provision of emotional support for residents and their families. Having been consulted during the formation of an ACP, care workers must sustain the dialogue between themselves and the resident in order to ensure that their values are expressed and respected in their treatment. The RACGP’s 2006 ‘Silver Book’ highlights the necessity of continued communication between all parties to palliative treatment of aged care residents: “Lack of clarity among the aged care team members or a lack of openness with residents and families may lead to conflict and confusion about care goals”.
The role of the care worker only becomes more vital when treatment shifts towards end-of-life care. End-of-life care can be particularly beneficial in an RACF as a consequence of the familiarity of the environment, other residents, and care staff, encouraging the resident to feel more ‘at home’ than they would receiving the same treatment in a hospital, for instance. The Silver Book cites a British Medical Journal supplement entitled ‘What is a good death?’, the 12-point summary of which could easily serve as a standard of service for end-of-life care:
1- To have an idea of when death is coming and what can be expected.
2- To be able to retain reasonable control of what happens
3- To be afforded dignity and privacy
4- To have control of pain and other symptoms
5- To have reasonable choice and control over where death occurs
6- To have access to necessary information and expertise
7- To have access to any spiritual or emotional support required
8- To have access to ‘hospice style’ quality care in any location
9- To have control over who is present and who shares the end
10- To be able to issue advance directives to ensure one’s wishes are respected
11- To have time to say goodbye and to arrange important things
12- To be able to leave when it is time, and not to have life prolonged pointlessly.
As with any issue concerning life and death, there are ethical issues at stake concerning DNRs in the context of a RACF. For instance, there is the potential for conflict between family members who are not peace with a resident’s decision to issue a DNR order, and care workers are likely to bear the brunt of this opposition. Recent legislative changes now prevent family members from contravening a DNR, but the task of moving them to reconcile themselves to the resident’s decision will require patience and continuous engagement by care workers and medical professionals. Furthermore, some care workers may be disquieted at the notion of not medically intervening to save a life, even if the person expressly refuses the treatment; this discomfort may stem from the idea that not performing CPR in the case of heart or respiratory failure is a form of what James Rachels refers to as ‘passive euthanasia’. However, quite apart from the legal distinction made by the Standing Committee on Legal and Social Issues between euthanasia and adhering to a DNR order, Bonnie Steinbock has argued that if the aim of not providing treatment is not to kill the patient but to ensure that a dying patient is as comfortable as possible in their final days, this can hardly be considered a form of euthanasia. Adhering to the wishes of a resident with a DNR certainly fulfils this requirement, and this thought may comfort those anxious about the issue.
The reader will, I hope, be convinced at this point of the necessity and complexity of the relationship between RACF workers, residents, and medical professionals in drafting and implementing advanced care plans and directives. The tendency of the Australian population’s life expectancy to increase only underlines the value of a robust and well-staffed aged care system.