In late 2014 we published our report Transforming care at the end-of-life: Dying well matters a subject that I feel passionate about and which I have continued to champion both through my research and also as a non-executive director in a district general hospital. Indeed, in our most recent report Vital Signs: How to deliver better healthcare across Europe, we included as one of the vital signs, palliative and end-of-life care. In this latter report we included a quote from Atul Gawande, "If end-of-life discussions were an experimental drug, the FDA would approve it".i This week's blog, by our colleague, Dr Anni Mekhail, recounts a patient story from her time as a resident doctor, and illustrates poignantly how having meaningful conversations with patients can help ease a very difficult time for the patient, their family and medical staff.
Moira's end of life care story
I was as a resident doctor in the intensive care unit when I first
met Moiraii. Moira would tell me she was ninety-four, or
eighty-six, or would be one hundred next week. She couldn't
really remember and she didn't think it was relevant that she
did. However, she was sharp as a tack on everything else. Moira had
end stage obstructive lung disease and had been in and out of
hospital with chest infections over the preceding few months. Each
infection left her progressively weaker and she had begun putting
her affairs in order.
It was two o'clock in the morning when I got to talk to her one night-shift, her chest was heaving and her breathing getting louder and more laboured. It looked like another infection was on its way. I told her this. I then explained that if it got much worse, the treatment option would be to intubate her and place her on a ventilator.
"No! No. Absolutely not." Moira told me, "I would rather die than end up on a ventilator." "My worry Moira, is that without the ventilator, you might." I replied.
"I'm ninety-six....or eighty-eight...whichever. I'm going to go sometime. I want it to happen my way. I do not want it to happen on a ventilator."
I opened my mouth to argue and, instead, what came out was, "What is concerning you the most right now?"
"I have cramp in my leg dear," she told me, "you can do something about that." So I did. I increased her pain-relief and stood rubbing her leg until her cramp settled. Moira was happy, and comfortable, and had got exactly what was most important for her.
I was proud of how my colleagues and I had managed Moira's case. We had stopped focusing on the rhythmic monitor blips denoting the frequency of her heartbeats, or the percentages trending up or down indicating her oxygen levels. We had resisted the relentless urge to try and 'fix' the numbers, and instead we had turned our attention to doing what was best for the patient.
When I began medicine I thought I had entered into it because I enjoyed science, and people, and the idea of taking away illness. Though I do enjoy those things very much, I have learnt over my years in the medical profession that understanding the science and eradicating the disease is not what is paramount for me. What matters most to me is being able to maximise a person's quality of life. To do this, it is vital that we customise our treatment to the individual, recognising that just because people have the same illness doesn't mean their needs are identical. And importantly that treatments should be designed around an understanding of each patient's wishes, their priorities, desires, and experiences.
Knowledgeable medical consultants classically talk about the marriage between the Art and Science of medicine. The Science of medicine being research, numbers, clinical guidelines, best practice protocols, test results, prognosis probabilities - the specifics.
Whereas the Art of medicine is never specific. The art is a dialogue; it is based on the healthcare professionals expertise, and matching the clinical information to the patient's own knowledge and understanding of what they want for themselves. It is not a protocol to be adhered to, but a plan to be mapped out in collaboration between two parties. It is not a blueprint uniformly applied and should not be the same for every patient.
Never has the 'Art of medicine' been so topical. We are at a time in history where the 'Science of medicine' has reached a point where hearts can be kept beating and lungs kept ventilated after a person has ceased to be conscious or communicative. This has created a new responsibility for us to map out these care plans while collaboration is still possible. It rests with us, as clinicians, as family members, as friends, to have the difficult conversations around death and to find out what the wishes of our loved ones would be at their end-of -life.
Although we cannot take away death, we can make it as painless as possible, we can make it comfortable, we can make it dignified, and we can hand the reigns of control back to those who are coming to their end of life. In each case, what is important to the patient will be different. For Moira, it was important that the cramp in her leg was relieved, for others their priorities will lie elsewhere. In all cases, the earlier that we can have these conversations the better for all concerned.
Dr. Ann-Marie Mekhail MB ChB – Assistant Manager, Health Transactions and Restructuring, Financial Advisory
Anni is a medical doctor with an interest in intensive care and trauma management. She obtained her medical degree in New Zealand and went on to pursue further research in public health and preventative medicine at Cambridge University. She has completed NHS Academy training in clinical leadership and has recently joined Deloitte's Health Transactions and Restructuring team, working with NHS Trusts in an advisory role, as part of developing a sustainable and transformational public healthcare delivery model. She is a member of Deloitte UK's ever expanding Clinical Network. Her passion is in the implementation of healthcare technology, both in front-end patient contact, and back-end automation and streamlining of the processes necessary for service provision. She has recently learnt to fall off a surf board and likes to tell people that this means she can surf.
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