Final costs: The emotional impact of providing end-of-life care

Abstract

The article highlights the emotional challenges that doctors face when providing end-of-life care, and argues that medical training doesn’t always prepare them adequately for this task. While palliative care specialists are particularly experienced in handling the emotional demands of caring for the dying patient, their expertise could usefully be shared more widely beyond their specialty. This is particularly important, given that most end-of-life care is provided by doctors from specialties other than palliative medicine. The suggestion is made that there needs to be greater provision of reflective groups and psychological support, to help doctors manage the inevitable emotional weight of their work. Although this would incur costs in the short term, such investment has been shown to be cost-effective in the longer term as it improves doctors’ wellbeing and enhances staff retention.

‘I never realised there’d be so many sick and dying people’ a foundation doctor once said to me. My immediate response (unvoiced) was a Homer Simpson ‘D’oh!’. What job did this person think that they’d been training for during the previous 6 years – flower arranging? But after thinking more about her remark, I began to see that she’d actually said something quite profound. How much do people really understand about the emotional demands of medical work at the point they apply to medical school? For nearly 30 years I’ve worked as an occupational psychologist, in both undergraduate and postgraduate settings, with a special focus on supporting students and doctors who were struggling. In the sessions that I have with these clients, I often explore their initial decision to apply to medical school. Frequently students and doctors mention doing well in science subjects at school, and teachers suggesting that they might have the academic ability to study medicine. Rarely do they report a more in-depth discussion with a teacher or careers adviser about the emotional demands of medical work.

Once they have started their training, how well do medical schools prepare students for the work that lies ahead? In terms of preparedness for working as a foundation doctor – the evidence suggests that some medical schools do a better job than others.¹ The medical school which I have just retired from scored very well on this measure, and also had a particularly large number of Objective Structured Clinical Examinations (OSCEs) throughout the 5 years of the course. I often wondered if there was a causal link between being constantly observed carrying out practical tasks (on the frequent OSCEs) and feeling better prepared for foundation.

But general preparedness for foundation is a broader measure than assessing how well a medical school prepares doctors to deliver end-of-life care. My experience at the medical school suggested that when one looks at this specific issue, preparedness was highly variable. Although there was a compulsory reflective practice assignment linked to a short palliative care module, students completed the task with different levels of engagement. While many were able to consider the emotional impact on them of caring for patients at the end of their lives – (particularly when the patients whom they interviewed were younger) – the reflections of others were little more than a tick-box exercise. This tallies with the findings of researchers at Cambridge Medical School,² who concluded that ‘final year medical students found it valuable to meet patients in the palliative phase of illness’. In particular, students welcomed the opportunity to spend dedicated time talking to these patients, and also to learn about the wider elements of palliative care, including its holistic focus. Yet these authors also reported that other students resented the task, such as the student who wrote ‘I didn’t appreciate having to write a long essay about it. I don’t think it has made me a more reflective person’. One size doesn’t fit all, when it comes to preparing medical students for the challenges involved in delivering end-of-life care.

What about the preparedness of doctors later on in their training? This is a theme that crops up regularly when doctors talk to me about their careers. Sometimes these discussions focus on how they can find themselves too rushed on the wards (particularly at night) to provide dying patients, or their family members, with high-quality care. Long before the use of the term ‘moral injury’ became widespread in medicine,³ this is what doctors described, frequently citing the underlying systemic causes such as excessive workload or lack of adequate support. These conversations also contributed to a core conclusion that I have drawn from my work in medical education – people don’t enter the profession out of a desire to provide shabby care to their patients. I have met doctors who chose medicine simply because of the prestige of the profession, and didn’t care a hoot about their patients. But doctors like this are vanishingly rare. I don’t think I have encountered more than three such individuals in nearly 30 years training and supporting medical students and doctors.

What I have witnessed is how hungry resident doctors are for opportunities to enhance their end-of-life skills. As an example, I’ve never forgotten sitting in on a session with foundation trainees when a palliative care physician delivered some teaching on managing breathlessness at the end of life. Very early on in the session, the consultant detected considerable levels of distress in the group about some of the deaths that they had witnessed on the ward; some felt out of their depth when it came to pain control, while others were unsure what they should be saying to relatives. The palliative care doctor abandoned the intended topic of the session (breathlessness) and instead just let the doctors talk in detail about their experiences. Then, and only then, did he give them some advice as to how they might want to handle these different situations. It was exemplary teaching and it left me wondering whether the expertise of palliative care doctors is routinely shared with doctors in other specialties. And even when palliative care consultants are asked to teach, how frequently does the teaching extend beyond symptom management (vital though that is) to include the complex ethical and emotional issues entailed in caring for the dying patient? My hunch is that there is considerable untapped expertise among palliative care specialists, which could benefit doctors from each and every specialty providing end-of-life care. After all, most hospital end-of-life care is actually provided by physicians from other specialties, rather than palliative care physicians.⁴

I’ve also had the privilege of working with a number of palliative care residents and consultants at different points in my career. Perhaps unsurprisingly, many are among the most thoughtful and psychologically attuned doctors that I have ever met. I don’t think this is a coincidence; palliative care specialists encounter patients (and their loved ones) at probably the most challenging moment of their lives. In addition, these specialists can’t resort to omnipotent fantasies of ‘curing’ the patient and instead need to face up to the inevitable limitations of even the best medical care. Medical arrogance (even when it stems from an unconscious wish to avoid confronting the inevitability of suffering and death⁵) is a barrier to true empathy.⁶ In contrast, humility, which the best palliative care specialists have in spades, leads to an authentic patient encounter of an entirely different nature.

But from the conversations I’ve had with palliative care doctors, I’ve seen how demanding the work can be. One doctor in particular comes to mind. A few years after becoming a hospice-based palliative medicine consultant, Dr A was herself diagnosed with cancer. Following 9 months of treatment, her prognosis was reasonably good, although there was still the chance that the cancer could return at any point. With two young children, Dr A was struggling with the emotional demands of her role. Unsurprisingly, these demands felt heavier because her dying patients, particularly those with young children, constantly reminded her of her deepest fear – that her cancer would kill her before her children were grown up. Dr A’s husband was in secure employment and a number of years before she became ill, she had taken out income protection for her own job. Both of these things gave her a degree of financial flexibility, which obviously not all doctors have. As a result of the sessions that we had together, Dr A took a step that surprised some (but not all) of her colleagues. She decided that while her children were young she would step away from patient care, and instead work in a non-clinical role that didn’t involve caring for patients at the end of their lives.

Of course – it’s not only palliative care physicians who can find themselves in the situation where their personal health (or the health of their nearest and dearest) echoes the health issues of their patients. This is something that I’ve encountered repeatedly in my conversations with distressed doctors; paediatricians whose children have died, gynaecologists whose fertility treatment has failed, oncologists with cancer, to name but a few. With the exception of having a condition that would preclude entering medical school in the first place (eg a disability causing intellectual impairment), any medical condition, and every form of accident, that can happen to people aged 18–70 can affect a medical practitioner.

A common theme when I’ve talked to doctors about their own health is the lack of empathy that has been shown to them by some of their colleagues. Yet I don’t attribute this to hard-heartedness on behalf of these less-than-sympathetic physicians. Instead, I see this response as a by-product of the fact that doctors are given so little time and space for managing the inevitable anxiety that exposure to sick and dying patients can evoke in them. As a result, a common response (which happens unconsciously as a defence against being overwhelmed by anxiety) is to view themselves as being categorically different from their patients. In this way, the unpalatable truth that anything that they treat in their patients could also happen to them, or to those they love, is held at bay. Sick colleagues muddy the water as they are living, breathing proof that doctors are also human – just like their patients. Such reminders are unwelcome, and it is this that underpins the findings of psychiatrists such as Robert Klitzman, who has described how difficult it can be for doctors to treat their colleagues with the same level of care that they typically give to their patients.⁷

But these doctor/patients have so much to teach all doctors. To quote Liz O’Riordan (a breast surgeon with recurrent breast cancer)⁸:

‘I had underestimated how hard it was to tell 10 women a day they have cancer, that it had come back, that they needed chemo or more surgery, and absorbing all that emotion’.

‘People would cry, scream, shout, punch. As a doctor, you’re the person breaking their world and somehow you have to put them back together. And then do it again and again and again’.

‘Nobody talks about it. You never see consultants cry about the patients they’re going to operate on because we’re all pretending to be superhuman. We’re not taught how to deal with all that emotion and we don’t have the support mechanisms in place’.

So what could these support mechanisms look like in practice? Resilience-building workshops aren’t the answer; the emotional impact of medical work, as O’Riordan outlines above, isn’t caused by a lack of personal resilience.⁹ Balint Groups¹⁰ and Schwartz Rounds¹¹ both have a role to play – although many doctors work in settings where neither are available. But each and every hospital could set aside protected time for doctors to talk openly about the psychological impact of their work and to share challenging cases. These groups need to be facilitated by appropriately trained staff who can manage sometimes tricky group dynamics, as well as emotionally charged discussions. Of course, time for attending these groups needs to be formally protected within job plans to ensure that clinicians of all levels of seniority can attend; having the most experienced doctors present sends a powerful message to junior colleagues that these types of discussions are an essential part of professional practice. There are also findings from the COVID era, that some doctors found it helpful to be able to access psychological support from within their trusts.¹² Often there’s psychological expertise in a different part of the hospital which currently is only used for patients – but could be extended to clinical staff.

Beyond what an individual trust can provide, the development of specialised mental health services for doctors such as NHS Practitioner Health¹³ and Dochealth¹⁴ have allowed clinicians to reach out for support when they are suffering burnout, mental ill health or addictions. Both of these services are invaluable, and many of the doctors who have come to see me to discuss their career difficulties have benefited from them. However, it is important to stress that trusts need to develop psychological support and reflective spaces much further upstream to prevent these conditions developing in the first place.

I realise that there are financial implications of all these different suggestions. Yet researchers on physician burnout have argued that prioritising staff wellbeing ends up being cost-effective in the longer term as it reduces presenteeism,¹⁵ cuts staff absences due to sickness, and improves retention.¹⁶ Minimising the emotional cost of providing end-of-life care isn’t impossible – but it cannot take place for free.

CRediT authorship contribution statement

Caroline Elton: Writing – review & editing, Writing – original draft.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.