Abstract
At the other end of life, we are faced with the same conundrum. Medical technology has been progressing in leaps and bounds since the second half of the 20th century. Medical outcomes have improved beyond measure in practically any field that one wishes to consider. Medical sub-specialization has brought with it inexorable progress, particularly in fields where technological expertise predominates, with interventions now possible in the smallest body cavities and interspaces. Progress in our understanding of physiological and pathological states has brought advances in drug therapy and the management of metabolic conditions that were previously lethal. Many infections have been subdued, if not entirely conquered. Organ failure can be reversed or the body indefinitely supported. The previously accepted indicators of death, namely the heart stopping and respiration ceasing, are no longer tenable, requiring further definitions of brain death or brainstem death to be developed.
This has had inevitable effects on society, and societal attitudes have changed with the progress seen in medical care.
My mother, an 87-year-old Chinese housewife who has lived all her life in Hong Kong, casually mentioned to me one day that she hopes she will not have to start renal dialysis soon. Her friends tell her that people really suffer on dialysis. She was not in renal failure, but she had ischemic and valvular heart disease, recurrent bladder cancer, an infrarenal aortic aneurysm that required complex intravascular stents, and early dementia at the time. It had not occurred to me that she would ever be offered renal dialysis, but here she was, speaking as though it was the norm that any elderly person whose kidneys were not functioning would be put on dialysis. Further, had she been offered dialysis, she would probably have resigned herself to it, since to refuse sounds unreasonable, as though she no longer wanted to live.
In much of the developed world, an increasing proportion of people now die in institutions, many of them in hospital. Much of hospital care is geared toward correcting problems, with the goal of restoring health. While this is entirely appropriate for problems that can be fixed, the system runs into trouble when faced with a patient near the end of his or her life, with problems that are not fixable, or those for which the fixes do not achieve the patient's goals, and which become more burdensome than life itself.
In this issue of the journal, Burgio et al. 1 report on do-not-resuscitate (DNR) orders in imminently dying patients. At six Veterans Administration Medical Centers in 2005, an overall 63.7% of decedents had active DNR orders, of which 40% were written within 2 days of death. This is comparable to the SUPPORT Study 2 done over a decade earlier, for which 47% of physicians knew of their patients wish to avoid cardiopulmonary resuscitation, and 46% of DNR orders were made within 2 days of death.
The good news is that code status discussions (CSD) can be taught efficiently and effectively, as a randomized controlled trial of a skills training intervention on CSD reported by Szmuilowicz et al. 3 in this issue shows.
While having conversations about DNR and code status is a step in the right direction, perhaps not subjecting patients who would benefit little from hospitalization to admission in the first place might be a better approach. Teno et al. 4 were able to show that discussions of DNR in nursing homes reduces terminal hospitalizations.
In Western developed countries, studies of people's preferences on place of death have shown a persistent preponderance for dying at home. A recent study of seven European countries 5 showed that in all but one country, at least two-thirds of patients with advanced cancer preferred to die at home. Yet the number of people achieving a home death in a country like the United Kingdom was shockingly low at 19% in 2007, while 58% died in hospital. 6
There are signs that the trends are reversing on both sides of the Atlantic. Between 1980 and 1998, the percentage of deaths in hospital decreased from 54% to 41% in the United States. 7 In the United Kingdom, though deaths at home fell from 31% in 1974 to 18% in 2003, 8 between 2004 and 2010, home deaths increased from 18.3% to 20.8%. 9
There are likely many reasons for this reversal of trends, and the development of hospice and palliative care and advance care planning may be factors. Indeed, in a systematic review of 58 studies, home care was found to be one of the factors strongly associated with death at home. 10
Palliative care is said to have “encouraged medicine to be gentler in its acceptance of death.” 11 I was reminded recently of the wonder of medical students on their 1-day palliative care home visit attachment when they saw a 90-year-old woman, who was uncommunicative due to multiple strokes, and was being lovingly cared for at home, develop gastrointestinal bleeding. There was no rush to the hospital for blood tests, intravenous line placement, group and cross-match, or endoscopy…only common-sensical measures, such as stopping feeds, ensuring comfort, communication with family and all who mattered, then watching and waiting. Would this be the terminal event, or would the bleeding stop on its own?
I was glad that they were able to see an alternative to what most consider modern end-of-life care. In our quest for control over our circumstances, we seem to have forgotten about the uncertainty of life and death, forgotten that everything has its own time, and that as many great religions teach us, there is a time to be born, and a time to die.