Unresolved, these contradictions lurk behind recent controversies in the NHS in relation to standards of care in our hospitals. On a daily basis, but usually unspoken, they influence the expectations and the perceived experiences of patients and their families especially at the end of life. They also have a profound effect on how doctors and nurses behave.
Powerful drivers dissuade us both individually and as a society from attempting to resolve the ambiguities and tensions surrounding death, and to our cost. But the incentives to do something about how we manage death and dying are mounting. A staggering 60% of the 550,000 people who die in Britain each year do so in hospitals (50% of them would prefer to die at home) and our hospitals can no longer cope. A
bout 50% of health care expenditure occurs in the last 6 months of an individual’s life and often the interventions are to no avail. However, the most powerful incentive of all is that one day both you and I will be among the 550,000 for whom the bell tolls, and I for one would prefer to die well.
So, my starting point is that we owe it to each other, without exception, to ensure that when death is anticipated and inevitable, a “good death” should be compassionately provided for. By a “good death” I am referring to an experience of the end of life - over hours, days, weeks or even months - that is symptomatically and psychologically peaceable, in surroundings that are secure and stress free.
This should be core business at the heart of the NHS, if only because very few of us will encounter death without first encountering the NHS. Caring for patients at the end of life should shape strategic planning, service provision, and staff training. If we do that, then as a bonus, we will also achieve cost savings, but that is not the primary aim.
A “bad death” is about suffering beyond what is existentially unavoidable when any man or woman is facing the end of their life. Medically, the distress of a bad death is rarely about the absence of adequate symptom control (palliative care in the UK is of a very high standard). Rather, in my experience, a bad death is increasingly related to “the system” i.e. how the NHS functions.
Although the key issues are service provision (it is mal-distributed), risk management (it is excessive) and continuity of care (it is fragmented), I am increasingly convinced that it’s also about our culture. The NHS reflects wider societal values and expectations, including how we think (or don’t) about what it means to die, and what it means to die well.
So how can things improve? Firstly, the taboo surrounding the “diagnosis of dying” needs to be broken. In practice, this means truthfulness about prognosis. Is the patient drawing near to the end of life? If so, let’s say it, though gently. Too often this is avoided even when clinicians and patients alike know that death is drawing near. Though it may cause temporary emotional distress, there is no evidence that honesty diminishes hope.
Most patients prefer truth to a benignly intentioned cover up. Prognosis is the first thing that a patient with major cancer considers when doctors utter the word. So why is it absent from conversations about things like emphysema or heart failure, whose prognosis is often a lot worse? As heart attacks and cancer have become less frequent, death from chronic organ failure has become more common especially in the elderly. In this setting, the anticipated period of declining health may be less predictable, but that does not mean that the topic should be taboo. If it is the honest opinion of a clinician that it would be no surprise if the patient died within the next 12 months, then surely the patient ought to know.
We also need more truthfulness about the limitations and even the futility of further medical interventions. This is especially so not just in the last few hours of a terminal illness, but when over a period of weeks or months, organ failure leads to deteriorating quality of life and is clearly leading to death itself. Particularly in patients aged over 80 who have had a series of hospital admissions, and who are already receiving maximum medical therapy, the thought often intrudes: “nothing is really working”.
But alas, this is rarely stated out loud. The over-riding need to do something is a compulsive, habitual trait among medical staff and frankly, it takes a lot of courage to behave otherwise. Patients are silently complicit. By doing something ... anything ... even when it is futile, it comforts everyone and a fiction is maintained. A mutual agreement in favour of truthfulness would enable doctors to break the habit and spare patients from the discomforts that come with unnecessary medical interventions, especially in those who are already frail.
Since the 1960s, the “we can fix it” philosophy has dominated medical services. It fuels public expectations, political decision making and funding priorities. It is still is a major driver for clinicians: oncologists feel compelled to go on treating disseminated cancer (at great cost); junior hospital staff fear censure for not making a vain attempt to resuscitate.
“Fix it” is the prevailing aim in Emergency Departments. The “fix it” approach does not allow for the possibility that what we are doing may be quite inappropriate. We are all trapped in the make-believe that everyone can ... and should be ... fixed every time. This needs to change.
Perhaps the recent enquiry regarding mortality in Hairmyres, Monklands and Wishaw General Hospitals would have been more balanced if a distinction had been drawn between deaths that were inevitable and deaths that were preventable. But the system did not allow it.
To state that not all deaths are preventable seems starkly obvious, but we function as if they were. Even when inevitable deaths happen, we resort to fault-finding. Risk managers reinforce the pressure. I am not suggesting that we go soft on accountability when mistakes lead to premature deaths. But the key word is “premature”. All the evidence suggests that when we allow the “diagnosis of dying” to be made, medical interventions (with all their associated risks) paradoxically go down, and so do mistakes. The quality of care goes up!
If dying means anything it means that we lose control, for who can control his or her death? The hours, the days, the weeks beforehand are characterised by increasing weakness or debility. The powerlessness that individuals experience as they approach their death is rarely articulated, but it is real. That powerlessness is often compounded when the patient, in need of symptomatic care, encounters “the system”.
Feedback indicates that dealing with “system” can be the worst aspect of a patient’s end-of-life experience. Very few doctors and nurses are uncaring or callous. But when operating on the conveyor belt of acute hospital admissions, “fix it” interventions and risk averse behaviours often trump good communication and compassion and even common sense. Tragically, health care professionals can be oblivious to what the patient may actually want.
Enter Anticipatory Care Planning (ACP). An Anticipatory Care Plan enables patients and their families to contemplate what lies ahead and to exercise some choices. This may include where the patient wishes to die, as well as what should or should not be done in a crisis. These things can and should be discussed in advance. There needs to be more of it. Ceiling of Treatment is a related concept that sets out how far medical treatments should go in the event of significant clinical deterioration while in hospital.
Whether a patient is on an end-of-life trajectory is taken into account. For example, should the patient be transferred from the ward to the Intensive Care Unit? Ceiling of Treatment does not provide for any treatment to be withdrawn, a point that addresses concerns raised by Baroness Neuberger about the Liverpool Care Pathway and whose Report prompted that protocol for care of the terminally ill to be axed.
Perhaps the greatest obstacle that patients face in the system is discontinuity of care. In our hospital, being admitted via the Emergency Department to a medical ward means an encounter with two or even three teams of doctors in the first 48 hours. That is the way the system works. Then at nights and weekends, “on call” staff and Rapid Response Teams, unfamiliar with the patient, also get involved to deal with crises.
It is a nightmare scenario as far as consistent and appropriate medical decision making is concerned. And ... you have guessed it ... the default position is to “fix it” by strictly following a protocol. The medical employment culture which includes European directives, revised GP and consultant contracts, and an increase in the part-time work force, also works against continuity of care. But are my employment conditions in life a greater priority to me than what I will later experience when I approach death? Doctors need to ask that question of themselves.
In July 2013, the UK Minister of Health, Jeremy Hunt, launched an initiative designed to address the continuity of care issue in England. He proposed that a named doctor or nurse would be responsible for vulnerable patients “at all times”. In Scotland, we already have a GP-based “palliative care register” for patients at the end of life. A determined effort to combine and develop these and other ideas is now required to overcome the frustrations and failures which the current system of providing care to patients at the end of life generates. This is a job for politicians, planners and managers as well as clinicians. It’s a systems problem, occurring against a background culture that needs to change.
Writing in the Sunday Telegraph of 2 February 2014, David Prior, Care Quality Commissioner for NHS England, also called for a culture change in the NHS, “without which it will go bust”. His slant focussed on the accountability culture and not surprisingly, being deputy chairman of the Conservative Party, on the culture of service provision in relation to privatisation and competition. His particular ideas may stop at the border, but it is complacent to think that a culture change is not required in Scotland. The health care system here is teetering on the brink just as much, in part because we insist that high-tech, expensive medical interventions should be universally applied, including in the last few weeks and months of life.
The alternative is for us to admit that we are mortal, that saving life is not possible for ever, and that a time comes to embrace these truths openly. This approach should not be construed as failure, nor should it lead to abandonment of the patient. Rather, it should shift the emphasis in delivering our health services. A “good death for all” should be an explicit aim throughout the NHS. We need a new consensus on this, but at the moment the taboo prevents us from reaching it.
• D. Robin Taylor is a part-time consultant in respiratory medicine at Wishaw General Hospital, and is Honorary Consultant in the Primary Palliative Care Research Group, Faculty of Medicine in the University of Edinburgh.