Tessa Richards: “Therapeutic relationships”—prized but hard to deliver

Tessa_richardsI hate to think of what I’ve cost the NHS since I was diagnosed with cancer in 2004. This year alone I’d need to factor in 12 outpatient appointments, seven MRI scans, and a course of radiotherapy. And “the worst is yet to come,” as one consultant I saw wryly reminded me. But sufficient unto the day. I’m grateful to be alive and kicking, and having plenty of opportunity to observe how health professionals’ behaviour affects patient wellbeing.

My interactions with staff have ranged from good, bad, to indifferent, but one stands out: a new appointment with a consultant radiotherapist. Unusually for a tertiary hospital, it was a one to one consultation. As a rule, one sits and waits for the retinue to arrive and conduct a “team meets the patient” event—a mode of communication I find disquieting. One is never quite sure which member of the (often changing) team one is supposed to relate to.

Refreshingly, she did not start the conversation with the conclusions of the last multidisciplinary team who discussed my case. She simply asked, “Well, with all this going on, how are you feeling? How is it affecting your life and that of your family?” For the first and only time since my recurrent inoperable cancer was detected, I was moved to tears. I was being seen as a person first, rather than another case with interesting pathology (although that has its upsides).

She has continued to be there for me and we “talk” by email if needed—a mode of exchange I am careful not to abuse. I know how rarely doctors give patients the opportunity to reach them this way.  She has, in effect, agreed to be my professional partner in care. Her wise, kind, and timely counsel, brief and to the point, is beyond rubies to me. It’s helping me steer a course through a choppy sea of multi-centre, multi disciplinary management.

We know that empathy and support from a doctor with whom one has a trusting, ongoing relationship is important to patients. We also know that healthcare organisations don’t or can’t prioritise it.

One member of my family who has a debilitating chronic disease is on appropriate treatment, but lacks a “therapeutic relationship” with a health professional. I have suggested that he goes to an online patient community for support. I also asked the head of department in a hospital he attended for their view on continuity of care (after noting that he had seen five different health professionals in five consecutive outpatient appointments). The reply was “We prioritise the training needs of our staff.”

This is cold comfort for patients. So is the fact that, increasingly, they are likely to encounter health professionals who are suffering from “burnout.” Definitions of the term vary but coalesce around emotional exhaustion, a cynical attitude to work, and reduced performance. The knock-on effect on them, their patients, and the healthcare economy is significant and warrants further exploration. Organisations that don’t provide a supportive workplace for staff can’t expect them to provide compassionate, patient centred care.

Two months ago I underwent tumour ablation. (I paid for it on this occasion, for the NHS does not fund the technique I underwent for my rare cancer.) The experience was harrowing although the outcome good.  I felt “processed” rather than cared for. Pain relief was poor and personal care patchy.

At one point I was crying in pain and very scared. I was told to pipe down. I guess I was disturbing fellow patients. But I was beyond thinking about them. My dominant, but unsolicited, concern was “My God, I don’t want to die now, not like this, not here.” I was in no position to judge if the staff who cared for me were suffering from burnout, but I would not be surprised if they were.

While still smarting from this experience, I asked The BMJ’s patient panel for their views on whether patients have a right to be seen by professionals who are not burnt out? They saw this as a counsel of (unrealistic) perfection. Burnout must be acknowledged as a pervasive and “wicked” problem in health systems, and patients should be aware of it and seek to play their part in reducing its frequency.

A movement that seeks to do this is Hearts in Healthcare. In the UK the Point of Care Foundation underlines that the NHS must recognise that caring for those who work in healthcare is key to providing compassionate, good quality care. In their 2014 report they note the link between higher staff satisfaction and lower rates of mortality and hospital acquired infection. The international WELL-Med community are pushing similar messages. The two are currently joining forces in an effort to advance debate on burnout, to generate evidence on how best to tackle it, and to get it firmly on the agenda for quality and safety in healthcare. I’m with them, every step of the way.

Tessa Richards is senior editor/patient partnership, The BMJ.

  • susanne stevens

    Dear Tessa Richards.I feel very sorry that you have had/are having such a tough time and hope things will get better for you. To be honest I don’t agree that burn out is an excuse for treating others in distress badly but if this is so the health workers are being put in a position of possibly causing harm whether physical by making mistakes or by causing psychological distress of the kind you describe. The psychological should be viewed as serious as physical harm. Health workers have a duty of care and to do no harm so
    My thought is that helath workers should be obliged to take a fitness test every so often ..6mths? If they fail then just as workers in other areas of employment they should take obligitory paid sick leave if diagnosed as in danger of suffering from burn out. This would reveal how many people are actually already unwell and possibly not practicing safely and be a precautionary and preventative measure to tackle full blown burn out.. Like you I have had some horrendous treatment and some kind treatment in the past, it is unpredictable and shocking when humanity is missing from such an important encounter, Best wishes susanne

  • Dr. Amy Price

    It is wonderful you and the empathetic doctor found each other. I feel empathy in the form of active listening like this example is the fastest and most effective way to see what is important to the patient and steer the treatment accordingly, relationship is part of treatment too.

    This quote “We prioritize the training needs of our staff.” needs to be challenged and revised as this is a major component of training staff. Maybe it is something we as patients and clinicians could advocate for together.

    I was so glad to hear I am not the only one who is unsettled by the “team” approach, it makes me feel like a piece of meat…and then I feel guilty for my hostility and this makes for a bad piece of meat. I guess it is also because if it is good news one person delivers it and if it takes a whole group it is not good and I need to face it in front of all of them before I have processed it myself.

    I found it was helpful to get them to introduce themselves and respond as individuals rather than “we decided”..

    .I especially dislike radiology reports where I have no copy, they have already discussed it in my absence and then say it is a group decision.

    Maybe we could take My name is Kate one step further by adding and… instead of we.

    All the best for a good outcome and thank you for helping us through your journey.

    PS. On burnout I wonder if we can do as the pilots have done and show it does harm and that harm costs the system money. I think to get the real conversation on burnout might take several interactions, my knee jerk response was a dichotomous, just make it stop. I only reflected afterwards that this was a trauma response and that beyond this there are helpful ways we can broker change for all.

  • Jocelyn Cornwell

    Dr Richards’ blog reminds me of a piece Kenneth Schwartz wrote more than twenty years ago in the Boston Globe Magazine ( http://bit.ly/2aBvCFC.) Schwartz survived eighteen months after
    being diagnosed with terminal cancer when in his forties. During that time he was treated by professionals who were kind and caring, and some who were indifferent and seemingly heartless. Twenty years ago he wrote that “the smallest acts of kindness helped to make the unbearable bearable.”

    I came to the blog fresh from a meeting with senior nurses where we talked about whether it would be possible to develop the practice, on an acute ward, of a clinician (a nurse, doctor or therapist) sitting with every patient for five minutes every day, with an open-mind, no agenda and an attitude of attentive listening?

    Some of the nurses thought it a brilliant idea: they felt it would fulfill nurses’ hopes and aspirations for their roles; help with retention and patients would like it. Others thought it impractical and unrealistic. They added up the total number of minutes required
    on an average fully occupied ward and wanted to know where would the extra two to two and half hours for ‘just sitting’ come from? And there was more: the clinicians would be vulnerable to criticism; they would need permission to do it; the executives
    would not sanction it; it would not be tolerated in an environment obsessed by metrics and driven top down by performance management.

    Modern healthcare is in a troubling place. Medicine can do more for patients today than ever before – witness Dr Richards’ cutting edge surgery. And yet within hours she was enduring an experience so lonely and harrowing that she felt “My God, I don’t want to die now, not like this, not here.”

    I have no idea why a nurse would tell someone in pain to “pipe down”, but if we agree that is unkind and unacceptable then surely all of us need to ask whether we have the right priorities? If empathy is not essential, then just what are the real goals we
    are trying to achieve in modern healthcare?

  • Sebastian Kraemer

    “Organisations that don’t provide a supportive workplace for staff can’t expect them to provide compassionate, patient centred care.” this is the key, as Jocelyn Cornwell also notes. ‘Horizontal’ staff support goes against the grain of a top down health service – and has to be skilfully managed, otherwise people will just not bother. This is a recent, long essay on the subject http://bit.ly/2bVyyTA