An invitation to An Evening with Death

Where do you want to die? How do you want to be remembered? What is it like to be present when someone dies?

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Death is a subject that it is often difficult to talk about, but is something we all have in common. On this blog I have shared some of my thoughts and experiences as a healthcare professional, having seen death, dying and grief more than most people I know. I have advocated for more open discussions about the fragility of the human body, the limits of medical interventions, and the freedom to live life to the full that might be gained from embracing it’s finite nature.

As a teacher I believe I have a responsibility to prepare medical students to deal with death and grief, and wonder whether we need new ways to do this effectively. Can sharing our experiences with the public be a learning experience for all? Can the arts and humanities help us to cross the ‘us and them’ doctor-public divide?

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Can we find the spirit of ’45 in 2013?

Today marks a defining moment in the history of Britain, but looking around you wouldn’t believe it. Today, April 1st 2013, sees the The Health and Social Care Act (HSCA) come into force.

The death certificate of the NHS, issued by the National Health Action Party

The death certificate of the NHS, issued by the National Health Action Party

Some still believe that those opposed to the HSCA are over-dramatic, reactionary or naive. They will probably dismiss the National Health Action Party as extreme and publicity-seeking as it has issued a death certificate for the NHS, citing the cause of death as the HSCA 2013, with contributing causes including Thatcherism and the failure of New Labour. But it is difficult to see how anything but extreme statements and gestures can capture the attention of the public. Our generation is standing by as the NHS is quietly privatised and I for one am ashamed.

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What’s in a name?

At work recently I felt like a broken record. “What’s their name?” I said again and again with increasing frustration as I received calls about patients who were referred to as “bed 3,” “side room 1,” and “bed 9.”

Of course, at times it is convenient and even desirable to omit a patient’s name in a conversation. It was suggested on Twitter that it may be better to overhear what ‘bed 9’ needs rather than ‘John Doe is ready for his haemorrhoidectomy,’ and in this case I agree! My worry is that in most cases there is no explicit intent to maintain confidentiality. Instead the convenience of referring to people by their bed number slips into routine communication. I have certainly been guilty of this myself. I worry that this is not merely disrespectful, but that it contributes to the dehumanising experience of being a patient, and negatively impacts on the doctor-patient relationship.

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The human touch

I recently took a group of medical students to see Mrs Cole*. She was 88 and was in hospital due to a severe exacerbation of COPD. She was kind enough to let us talk to her and listen to her lungs, despite being quite breathless. As we talked I perched on the edge of the bed and, as I often do, held her hand.  She grasped it tightly and wouldn’t let go. I finished the teaching session, sent the students off to their lecture, and stayed with Mrs Cole longer than I had intended. It felt like she was clinging to me as we talked; clinging to my youth, my health, and my carefree existence.

I couldn’t offer her much: we were treating her exacerbation but no drugs could reverse her lung damage. No words could allay her very real fears for the future. But I felt what I could offer – a tiny piece of my time, and my hand to hold – meant something.

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A scarf, a suicide and a sense of perspective

I went out last night. It was cold, and just before I left the house I picked up my favourite scarf from the hat-stand. It’s my favourite for many reasons but predominantly because Miriam, who gave it to me, was wonderful.

Was.

She’s not here anymore. She committed suicide.

We were not best friends. We weren’t even really very close. She was my boyfriend’s best friend’s girlfriend. We would often be at the same social events, would sometimes have tea together over breakfast, and spent a lot of time together waiting around for ‘the boys’. Miriam was a medical student. One day, in the run up to end of year exams, she left the library where she had been studying, went home and killed herself.

Her death was a huge shock.

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When the lights go out

Most people I know have never watched a person die. Even those that have been to funerals and therefore have seen and been in physical proximity to a body, have rarely been present at the moment of death. The moment when in the eyes of the dying person the lights go out.

I have been there, in the moment, a number of times and remember every time with eerie clarity. Sometimes I have known the patient well; other times I have only met them in their last minutes or seconds. Sometimes it has been almost ethereally peaceful. Other times it has been frantic, chaotic or distressing despite our best efforts to treat end of life symptoms. Most often it has just happened.

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Life in my shoes

On a recent set of on call shifts I met James,* who my team treated for pulmonary emboli. He was a lovely man; visits to check he was on enough oxygen to maintain his saturations and to assess his haemodynamic status were a joy, due to his easy manner and good humour.

Pulse Oximeter, for monitoring oxygen saturations

One one occasion I was with my Consultant, who had known James for a while prior to this admission. At the end of the consultation he asked a very powerful question “is there anything else on your mind?” At this point I was closing the notes folder and putting my pen in my pocket, expecting to move on to the next patient. But James  did have something on his mind.

What I have not mentioned is that James is HIV positive. He has been living with HIV for many years and facing the challenges associated with this with resolve and good humour. His current problem was not directly related to his HIV status, but as is the usual practice whilst he was in hospital he was cared for by both the general medical team, and the “immune deficiency team” who were able to advise on potential interactions with his ARVs and give other specialist input.

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How to die: CPR and the concept of futility

I recently cared for Ernest,* an 87 year old gentleman who spent around two weeks on my ward. Prior to admission his health was poor. He was bed-bound due to the late stages of a degenerative neurological disease, and had associated cognitive impairment. He had several other health complaints, and had been in hospital multiple times in the previous year with infections. He had always responded to antibiotics but his condition and level of interaction with the world had declined with each admission. On arrival to our ward I noticed that he did not have a DNAR order and, since he was not able to discuss his wishes, I looked to the family for information and to broach this subject. I was surprised to find that several vocal family members were adamantly against a DNAR. I had lengthy discussions explaining my reasons for believing that attempts at resuscitation would be futile and that setting limits of care was important to ensure we pursued quality, not just quantity of life. They listened, seemed to understand, and themselves identified his frailty, deterioration over the last year, and decline in his quality of life. However they strongly objected to us making him “not for attempted resuscitation.” As the end of the week approached I felt uncomfortable about the lack of a DNAR order, and about the possibility of this frail gentleman suffering a brutal and undignified exit to the world should his heart stop.

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Health, wealth and the centenarian

Recently I treated and discharged a 101 year old gentleman. Back to his own home. And not a care package in sight.

As a hospital physician I rarely meet this group of older people, living full and independent lives. My view of the over 65s is coloured by my frequent encounters with the most unlucky ones; suffering from chronic disease, dementia, cancer and frailty.  But they exist, these sprightly centenarians and in increasing numbers. And even more common are older people with a lot to contribute to society, but in need of a little support in order to maximise their potential. Between now and 2050 the number of people aged 80 years will almost quadruple to 395 million. At that point, there will be more people over 65 than children under 14.  Our world is changing, but are we ready for this global silver revolution?

As a broad generalisation “western society,” does not value age, experience and wisdom. Our culture is obsessed with youth and a narrow definition of beauty which has no time for those perceived as “past their prime.” But in the last few weeks I seem to have read an abundance of good news stories about older people doing incredible things. On Saturday Live on BBC R4 I listened in awe and fascination to Mary Hobson who took a degree in Russian in her 60s and now, in her 80s is winning awards for her version of Pushkin.

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5 things

This week is Dying Matters Awareness Week 2012, the theme of which is “small actions, big difference”. As part of the campaign, people are being encouraged to take small actions which include:

  • helping someone to write a will
  • showing and discussing one of the Dying Matters films
  • visiting someone who’s been recently bereaved
  • becoming an organ donor
  • documenting your own end of life wishes
  • writing down 5 things you want to do before you die

Some of my friends and family think I spend too much time thinking about death. But because I think about the fact that life will end (hopefully not for a while), it seems so much more precious. So here are 5 things for my bucket list:

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