Accepting death and illness as a doctor and as a patient

Comments: 13

Katie Groom is studying medicine at a London university, and is currently in her second clinical year at a London hospital. This is one in a series of stories that the Point of Care programme is presenting on the issues that staff face in trying to ensure a positive patient experience. The views given in this article are those of the author and do not necessarily represent the views of The King's Fund.

As I'm settling into my second clinical year as a medical student one recurring theme has stuck with me; when a patient chooses an option that goes against our logic. It is something that is beyond my control, so I have found it difficult to fully accept.

As trainee doctors, we sit in outpatient clinics furiously scribbling down everything that is being said while the doctor informs the patient of the best treatment available. In most cases, patients agree with them. However, this is not always the case.

Over the past year I have seen many patients refusing their advised treatment or wanting to end their life. I vividly remember one patient, who had severely disabled hands and feet from untreated rheumatoid arthritis, a fairly rare sight these days as treatment is now so successful. A devout Irish nun in her late 70s, she was in hospital for an unrelated case of pneumonia, but she was perfectly happy to speak at length about her condition, and was at ease with her disability.

I took the patient's history, asking her about her rheumatism, and it soon became apparent that she had repeatedly refused treatment. It was the first objection to medical treatment I had witnessed in my clinical career. I was completely confused: why would someone refuse a treatment that could improve their functional ability? The patient's response has stuck with me ever since.

She said that if she took the treatment – continuous use of steroids – her immune system would have become so compromised she would have died much earlier of something else. She wouldn't have been able to fight off any infections and would have been predisposed to other life-threatening diseases. Sadly a lot of her friends had passed away, and she was convinced that not taking this course of steroids had increased her chance of survival.

I asked her doctor whether he would have done anything differently if he had been her doctor when she first presented with rheumatoid arthritis. He shrugged, saying 'there is nothing you can do; you can only offer what is best for the patient'. Contemplating this later, it occurred to me that perhaps, in this particular patient's case, her best option was to do nothing – to live with the debilitating effects as she felt they outweighed the effects of the treatment. Do we as doctors have the right to dictate how someone lives their life? As the doctor said, we can only offer treatment; we can't force patients to comply. It may seem frustrating, but with examples like this one, I realised that there is no room for judgement in clinical practice. Instead we should try to understand a patient's decision.

It is important to be clear about how many patients truly understand their condition, the treatment options and the effect it will have on them. This understanding won't necessarily happen after just one consultation, after diagnosis or even sometimes for years into the condition. But I felt assured that this particular patient completely understood her decision and, it seemed, had never regretted it. Perhaps her religious life had had an effect on her acceptance of the condition: religion and the acceptance of illness and disease is a frequently debated topic in clinical medicine. Some may argue that she had been subjecting herself to a life of pain as a sign of the ultimate sacrifice to her God. Others may assume that her acceptance has allowed her to not only live with this disease, but to be at peace with it.

I have struggled with the acceptance of illness over the course of this year. The definition of acceptance is ‘a person's agreement to experience a situation, to follow a process or condition (often negative or uncomfortable) without attempting to protest, exit or change it’. Accepting the inevitable – be it the unexpected loss of a child, living with a degenerative disability, or giving up on all other treatment – can often help people to come to terms with their illness or grief. As a medical student, I find these decisions impossible– I think of the nun with rheumatoid arthritis and can understand the doctor’s anger and frustration. Doctors have dedicated their lives to finding a cure for this condition, but while the treatment prevents deformities, it ultimately leaves the patient dependent, and the nun felt this was too great a sacrifice. Surely that is her right as the patient?

If I'm being honest, my training hasn't yet taught me how to fully understand this patient’s decision. It may not come to me for a while, perhaps until I have my own career and have to make my own decisions about patients' care, or perhaps until I have to make a similar decision about my own health or the health of a loved one. I'm not sure we can just be taught this at medical school, but hopefully our experiences will help us understand them in time.


#908 Jocelyn Cornwell
Director, The Point of Care
King's Fund

Thank you for this very thoughtful piece, Katie. The issue you raise about how doctors feel when patients reject their advice is critically important. It's exactly the kind of topic that Schwartz Rounds (see other parts of this web page) providce opportunities for colleagues to dsiuss together. It also reminded me of a great book that I read over the summer and recommend highly: Jerome Groopman's "How Doctors Think".

#909 Anon

This article struck a chord with me as my mother - who died at the age of 55 from rheumatoid arthritis - made the same decision for herself early on in her disease. Unfortunately it didn't protect her from a premature death and I sometimes wonder if - when she faced severe pain - she regretted her choice. As her daughter - and later a doctor - I certainly questioned it at times. But when I reflect on the dignity that she carried through her life, I can only admire her for making a choice that she felt was right for her at the time. I suspect that making the choice to go 'against the grain' several decades ago was more challenging in a system where patient choice was not so prominent on the agenda. As the NHS focuses more on patient choice doctors and health professionals may need to be more prepared for challenges from patients. After all patient choice does not just mean deciding which GP you would like to register with or which local hospital to attend. Thanks Katie, for a thought provoking piece.

#910 Jo Lynn

I share the expressed view that this was a very thought-provoking article, Katie. My father is currently undergoing chemotheraphy for Leukaemia (AML) and has, as I anticipated earlier in the year, started making noises about choosing not to continue the battle. He is basing this view on the impact of the treatment, not on himself but on my mother, who he perceives as having to put her life on hold whilst she supports him. Obviously I want him to fight like mad and live forever but I do also respect his perspective and understand exactly. He is used to "being in charge" and it is therefore in keeping with his personality for him to decide how to play "his" cancer. From a purely medical point of view, he should subject himself to all the latest chemotheraphy treatment available. But from a personal point of view, where is the value in doing that if he ends his days feeling guilty for ruining his wife's life and feeling sad. The scientific approach is to focus on the disease or injury in order to fix it. A humanist, more 21st century approach is to look at the whole patient and consider emotional as well as physical needs.

#915 david roberts

Very thoughtful piece, goes against some of the grain of the "consumer sovereignty" perspective and highlights the conflicts that inevitably arise when there is a disparity of knowledge/information. However there are dangers in reframing this in terms of emotional needs rather than accepting whose life it is, and hence whose decisions.

#916 John Kapp

Doctors are taught at medical school that they are on a pedestal, and are superior to their patients, who are on their knees. This fans their egos that they can 'play God.'. It doesn't work, for them or their patients, and they pay for it by 'health inequalities' of a decade less life expectancy and 2 decades more long term conditions, just as Marmot report found for the poor. Although doctors are not poor, they are taught at medical school that complementary therapy is quackery practiced by charlatans, so do no access it. The rest of the rich do access it, so learn how to live healthily, and prevent sickness.

#917 Kathy Torpie
Patint & psychologist - Keynote speaker

Thank you Katie. This is a great example of the gap in medical training that teaches how to diagnose and treat illness and injury rather than treating the person who experiences the illness or injury. Of course you find it uncomfortable to reconcile your training- which is disease focused - when you are confronted with a fellow human being who is effected by BOTH the illness and the treatment.

Patient centred care changes the focus of treatment from the scientific application of medical interventions against disease and injury to treating the person experiencing the illness or injury. If the focus was on the patient from the very beginning of your medical training, there would be no reconciling to be done between your scientific expertise and your humanity when you became a doctor. Your focus would automatically be on the person you are treating and science would be a means of meeting the individual needs of that person rather than an arsenal to kill the enemy disease at whatever cost to the patient's other needs.

#40655 Lawrence Whyte
Registered Nurse

Thank you for sharing this. Often when patients decline treatment they are viewed as resistive or awkward but most people make the choices from the available options based on their own understanding of their health outcomes and after reasonable consideration of the risks and consequences of doing so. They are the experts of their own health status and we need to be more accepting of this.

#40704 Kiran Singh
Admin Assistant

Very thoughtful. Thank you very much for sharing your experience.

#40935 Anon

@ John Kapp
I take great offence to your sweeping statements. I was not instructed at medical school to assume a 'pedestal', nor do I have my ego fanned by anything. And as a staunch atheist, I couldn't be further from trying to 'play god' with my patients.

#40988 Liz Delahaie
community mental health nurse

I think that people have a whole range of reasons for opting for or declining treatment. It might well be that the individuals themselves may not be clear what factors shape their decisions which can also fluctuate or waver over time. It can be hard to accept that someone is making a major decision which as a health professional you consider is unwise. However being there with them and giving the best information available to us, ensuring they are aware of all options and offering emotional non judgemental support at that important moment in their lives is sometimes the most important thing we can do.

#41507 Antony

Hopefully as you progress through training and as a dr you will develop a great deal of experience. I think there is a place in medicine for paternalism even though there are those who shirk at the idea, where sometimes medical staff do know best and not the patient as the staff as the ones trained in these areas and we should respect staff and the knowledge they have. Yet patient centred care especially respecting their choice even when it is at odds with our own is something very important and therefore our explanation to patients becomes critically important so they have the information to make a fully informed decision as to their care. Sometimes it seems many of us medically and socially fear death and illness which is perfectly understandable, however, it is sometimes important in the face of many different opinions to not look at improving statistics such as mortality figures and let the patient have all options made openly available to them; even if that be pain, disability and death. Sometimes it is one of the most poorly explained topics with patients, the explanation of illness, end of life (where it is often done well in cancer patients but not always elsewhere), and options open to them e.g. if I have severe COPD and get a pneumonia - should I come to hospital and get nebs, steroids and antibiotics - maybe we talk to them and see if they do want this option, maybe some suffer so much if they have a severe exacerbation maybe they want palliation at home, often something seldom discussed with patients. Patient and healthcare worker experience I feel will improve the more information both parties share, but both parties have to be willing to accept ideas that they may not agree with but the communication is all important.

#41746 Margaret Millar
Patient Advocate
Alpha 1 Advocacy & Action

Katie you have my sympathies it cannot be easy to see a patient refuse treatment but there will come a time when a patient sits in front of you with all the evidence of a proved safe and effective treatment or therapy that you cannot prescribe because of by-laws and clinical pathways preventing you from prescribing. How are you going to feel when that happens, it must be just as heartbreaking, frustrating and must make physicians feel callous sitting there knowing that there is life saving therapy that the patient has full understanding about and you can do nothing but the basics for them. Respect for those Doctors dealing with this too it cannot be easy for them and heart wrenching especially for patients and parents who have passes the deficient genes onto their children.

#41999 PKF

Patients are people - give them the options and information and respect their decision. It's not for us to live other peoples lives.

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