As we enter another year of providing palliative and end-of-life care in general, and in the community in particular, we have the opportunity to reflect on some of the success points of 2018, while attempting to anticipate challenges we may face in 2019. In doing so, we have to also ask ourselves whether we are ready to support patients and those deemed important to them in meeting their needs. Dying cannot be stopped, so the challenge is what we can do differently in 2019 to make dying and death more dignified. Lessons from 2018 suggest that there is still a lot more we need to do surrounding older adults, the homeless and the impact of loneliness at the end of life, to mention a few issues. As people live longer into older age, there is the other challenge of frailty among this age group which will be very evident in 2019. We know that loneliness and homelessness have increased, and as a society, it appears we have become less and less tolerant of these groups. Lack of funding and other resources is only suggestive of how low as a priority these population groups have become. I would like to be proven wrong on this, but otherwise, such a picture can only highlight the unacceptable reality of our developed and civilised way of caring for vulnerable members of society. Indeed, this claim could extend beyond these two groups. Thus, 2019 is an important year in which we must come up with better ways to provide care.
As I write, 2018 is ending with the introduction of the ReSPECT agenda (in my area, for example), which is aimed at helping patients with a number of things including:
While ReSPECT—which stands for Recommended Summary Plan for Emergency Care and Treatment—has resonance with advanced care planning (ACP), we may believe, although debatable, that it might address the shortcomings of ACP. ReSPECT (more details available here: https://www.respectprocess.org.uk/) is thought to improve communication with healthcare professionals and avoid unwanted hospital admissions and unnecessary attempts at resuscitation to prolong life. ACP has or had similar aspirations. ReSPECT is thought to ensure standardised practice across the country so that we can minimise variance and increase compliance with ‘do not attempt cardiac pulmonary resuscitation’ (DNACPR) situations. Most clinical settings, including my own, have had a DNACPR directive in place for over a decade now, and we need to reflect on how this has made a difference to care and reduced avoidable hospital admissions.
This reflection is important because evidence continues to show that most people (81%) prefer to die at home, with only half achieving this and many (52%) still dying in institutions like hospitals (VOICES, 2012). We know that the process of dying and death itself makes demands on healthcare professionals and nurses in particular, at both the emotional and physical levels. Although we have done a lot of good work in 2018, for example, ‘forcing’ the teaching of palliative care philosophy into nurse training, nursing homes and hospitals, there is more that can still be done, in particular, to look after nurses and other healthcare professionals. One important question is: what are we going to do to boost the number of nurses training to become district nurses? Community nurses have the capacity to help keep patients at home, whereby their wishes and preferences are respected.
Achieving dignity in death takes into account the concept of a good death, but it should be viewed in relative terms. This means taking into account the context in which each death occurs and applying different criteria to achieve dignity specific to the needs, wishes and preferences of the patient or their family.
The challenges for us in 2019 are what and how are we going to do things differently? And are we ready to meet these challenges and make a real difference to all patients including vulnerable and marginalised groups in society? My own reflection of the years gone by is that we tend to introduce a lot of guidance and initiatives like ReSPECT, and yet we do not always wait to evaluate their impact before we come up with another recommendation. Of course, the natural tendency is to adhere to the next guidance produced, and at times, we end up trying to implement too many ideas simultaneously, which becomes counterproductive and with that, limited progress is made in enhancing quality of life and dignity in dying.