Tag Archives: death

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?

Screen Shot 2013-04-03 at 22.08.09

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?

Screen Shot 2013-04-03 at 21.27.21

On 16th May I will be hosting “An Evening with Death” with Hollie McNish, my good friend and UK Slam Poetry champion. It will be an evening of poetry, performance and discussion to support the Dying Matters Coalition’s aim “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make living and dying well the norm.” I am very grateful to UCL SLMS Public Engagement unit for supporting this event.

We hope that the evening will be thought-provoking, life affirming and fun! The event is free, but booking is essential so book your ticket now and join us for drinks and discussion at the Printworks Cafe, UCL. I hope to see you there!

For further information, I have curated some links to related events such as Death Cafe’s, Dinner with Death and other Dying Matters Events.

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. For a long time it didn’t feel real. Even after the memorial service it still didn’t seem possible that she was really gone. I didn’t know how I was supposed to feel, what I was supposed to do or what I was supposed to say. I couldn’t work out how upset I was supposed to be, and what other people would think if I cried or didn’t cry. I couldn’t work out how upset I actually was. I was angry at her for not placing enough value on her own life. I was angry at myself for not having seen her distress. I wasn’t sure if I was close enough to her  to have a legitimate right to grief. I didn’t want her close friends or family to think I was over- or under-reacting. I had no idea how to support my boyfriend or his best friend who had been the ones who had found her and called the police. All I knew was that this was all wrong.

My feelings were coloured by guilt. I am a doctor. Many of those close to her were doctors and medical students. Shouldn’t we have known? Shouldn’t we have seen the signs? Shouldn’t we have been able to do something? When I thought about it rationally I told myself that Miriam didn’t exhibit the classical warning signs. She was an outgoing, popular, successful, busy, kind, generous woman who appeared to be happy. How could we possibly have known? But rationalisations felt weak and pointless.

I recently came across a video in which Kevin Betts  articulates some of these feelings better than I ever could. In it he makes  ”the toughest speech of his life” for World Suicide Prevention Day, reading a letter to his dad who committed suicide. Kevin’s message to his Dad is  “I won’t stop.” He means it: to raise awareness about mental health and suicide he ran 52 marathons in a year. In his speech he says he loves his Dad, but also is disappointed in him as he “chose not to be here.” I struggle to know how I feel about this statement. Miriam “chose not to be here” but was it really a choice? How much control did she have over her thoughts and actions? I don’t know.

Estimates based on WHO data indicate that 1 million people a year die by suicide. The data is complex as suicides may not always be recorded as such due to social, cultural and societal reasons. Suicide attempts and suicidal ideation are far more common with 5% of people attempting suicide at least once in their life. The lifetime prevalence of suicidal ideation is estimated at 10-14%. Reports from the  ONS and Samaritans show that in 2010 there were 5,608 suicides in people aged 15 years and over in the UK, with rates highest in those aged 45–74 at 17.7 per 100,000 for men and 6.0 per 100,000 for women.

These data show that suicidal thoughts and actions are astoundingly common. It is likely that we all know someone who has had suicidal thoughts at some point in their life. Yet stigma, fear and misconceptions mean few of us realise this, and still fewer ever talk about it.

Something I found striking from Kevin’s speech was that he felt let down by health and educational institutions. I have treated countless patients in hospital who have tried to kill themselves. I feel like I let them down every time as I am so helpless  as a physician. I patch them up, make sure whatever poison they have taken doesn’t do too much damage and pass them onto the mental health team. I do not think I’m of any relevance to their life, and wish I could do more.

Kevin felt no-one wanted to talk about his Dad’s suicide. But he did want to talk, and continues to do so.

Suicide is not shameful or selfish. It is just a way to die

I think of Miriam often and can’t get past the feeling that if she could only have got through that day, and talked about how she was feeling, she would still be here. She taught me a valuable lesson: suicidal thoughts and actions are not something experienced by patients – they are experienced by people. I hope I never forget that. 

If you are experiencing suicidal thoughts, or know someone who is, please call the Samaritans on 08457 90 90 90 (UK) or Mind on 0300123 3393 (UK).  More information is available at Grassroots suicide prevention

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.

Jean* had been admitted from her nursing home with end-stage dementia and multi-organ failure and was clearly in the last hours of life when she arrived in the emergency department. I admitted her in the morning and was passing through the medical assessment unit a few hours later and felt the need to pop in and make sure she was comfortable. There was a stillness in her room that felt anticipatory. I offered to stay whilst the healthcare assistant went to attend to another patient and so happened to be sat by Jean’s bed when she died. She was calm and comfortable. When the moment came it felt like the world paused for a moment and held its breath, while she held hers, then exhaled as she breathed her last breath.

And then the world continued on, with one less person in it.

Each time I have had this experience I have felt the same incredulity at the enormity of the moment. Whether I apply a philosophical or a religious framework, I struggle to grasp what happens when everything that makes up the person; their memories, actions, impact, emotions, beliefs are suddenly gone. The contrast between the significance of the event, and the undramatic way it often occurs, never fails to astound me.

When I know that one of my patients is dying I always feel an urge to check on them rather more often than is clinically necessary. Somehow I feel a responsibility to make sure they are not alone for the final moment. I know that many nurses share this feeling, but I sometimes wonder who we are really there for. Are we fulfilling an unwritten societal contract that means we must ensure no individual has to face the abyss alone; or are we, the living, reasserting our own vitality by forcing ourselves into close proximity with death?  I know many nurses who, whether religious or not, still insist on opening the window after a patient has died to “let the soul out,” as part of a ritual ingrained in them during their training. Even the confirmation of death by a doctor, which mandates checking pupil reactions, palpating for the pulse, and listening for heart and breath sounds, feels part of the ritual. In a busy shift this necessary pause feels appropriate to mark the fact that the world has lost another individual. The need for ritual at the end of live is pervasive across ages and cultures, but in an era of high expectations of healthcare we seem to struggle more with the inevitable than ever before.

“For the love of God,” Damian Hirst

We need a greater acceptance of the body’s physical frailty and a more realistic view of the limits of medical intervention. We need to find a more tangible connection with all stages of the circle of life, despite our sanitised and secularised society. We need to embrace the fact that the inevitability of our own mortality sets us free to live in the moment. As Wittgenstein noted “eternal life belongs to those who live in the present.”

I intend to make every day I have left count, before the lights go out.

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:

  1. See the Northern Lights.
  2. Make the perfect blueberry muffin.
  3. Fall in love. Again.
  4. Read Les Liaisons Dangereuses, in French.
  5. Have a photograph I’ve taken published in a weekend newspaper.
  6. Be interviewed on BBC R4 Woman’s Hour.
  7. Donate 50 units of blood.
  8. Stay in a jungle treehouse in Peru.
  9. Procreate.
  10. Have my portrait painted, naked.

Actually once I got started I couldn’t stop at 5. There’s a lot of life to live.

This Dying Matters Awareness Week I urge you to do something that “makes living and dying well the norm.”

“To live is the rarest thing in the world. Most people exist, that is all.” Oscar Wilde.

A Grief Encounter

Last week was particularly stressful; marked by staff shortages, anguished relatives, conflict over complex discharge processes, and pressure to create beds. The amount of time I spent with each patient on my ward rounds was less that what I, or they, would have wanted but despite coming in early and leaving late there are only so many hours in a day. In weeks like these I often feel guilty as I leave work that I am unable to give more time to those patients and relatives facing the end of life.

More than many other people I know, I am acutely aware of the fragility of life.

Modern medicine is amazing and can achieve results and outcomes that continue to astound me. The satisfaction of discharging a patient with a smile on their face after an admission for respiratory failure that looked like it might be their last; or being able to tell a patient that their cancer is curable, is difficult to describe. But even more difficult to articulate is the sense that the days in which I have the greatest impact, the days that are most rewarding are those in which I’ve had to break really terrible news, and have done it well. Such conversations require patience, time, compassion and, I used to think, empathy. I have seen grief, and its many varying manifestations. But being close to grief is not the same as understanding it and I am often aware of the vast distance between myself and a patient’s relative as we sit side by side in a quiet room after I have delivered bad news. What do I really offer in this situation? I try to communicate the medical facts clearly and sensitively, and give patients and families a sense of what will happen next. I feel sympathy, but am unsure whether I can truly say that I empathise. I have limited life experience and, thankfully, very little personal experience of death, and I find it difficult to imagine what grief feels like.

I recently read a powerful blog from a woman who had seen friends, and acquaintances experience grief, helped them through it and thought she understood. Until her father died. “That night I fought off a panicked dream of the earth falling away under my feet. I realized then, that until that moment, I had never had the right to speak.”  This acknowledgement that there is a gulf of emotion between seeing and experiencing grief is something others have identified, including physicians.

I hope that I can continue to find the time, compassion and words to help patients and their families through the most difficult times in their lives. But, selfishly, I hope that for as long as possible I maintain a degree of distance and lack of understanding and that I continue to sympathise but not empathise.

“No one ever told me that grief felt so like fear.” C. S. Lewis (1898 – 1963)

Last week a man asked me to kill him

I had just told Mr George* that his end-stage heart failure had become refractory to treatment, and I thought it likely he would not survive this hospital admission. He looked at me carefully and said, “Well that’s it then. Can’t you just give me something…end it for me?”

This is not the first time a patient has asked me such a question, and will not be the last. Often the question is more ambiguous, and it is unclear exactly what they are asking for: “can you just put me to sleep?” could be interpreted as a plea to end their life, but could equally be a request for a break from their symptoms or thoughts, with the hope of a more energised remaining time afterwards. It is a constant challenge to interpret such questions appropriately and personalise support and treatment for the needs of the individual.

In this case I did not hesitate in giving the only answer I could. Both the law and the GMC’s guidance are very clear that both euthanasia and assisted suicide are illegal. However, I always feel uncomfortable with the knowledge that I am powerless to alleviate suffering that is not physical. People who are dying have complex emotional and existential needs that a shot of morphine is not going to touch. What often strikes me about patients like Mr George is that the thought that they are dying still seems to be a surprise for which they are unprepared. I wondered whether he had talked about his thoughts and wishes for his death before now, and whether the many healthcare professionals he must have encountered in the year up to this admission had ever broached the subject with him.

Death is an inevitable part of life but as a society we seem unwilling to acknowledge this. As doctors we are as guilty as anyone; complicit in the idea that advances in modern medicine have the potential to cure all. The medicalisation of death and dying have hidden it away behind sanitised white doors; no longer is it commonplace to see a grandparent die at home surrounded by family, as it once was. The secularisation of society has also contributed to a disconnect between life as we experience it day to day, and a bigger concept of time, place and meaning.

As doctors we need to talk about death with our patients and give them the space to express their beliefs and wishes. As individuals we need to talk about death with our friends, partners and families and break the societal taboo. Some believe a “good death” is an oxymoron, but I disagree. For my own death I hope for comfort, dignity and a fulfilling life before it inevitably comes to take me. Life matters. Dying matters.

*names changed to maintain confidentiality