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Farewell to 2016; where it seemed that every month brought another death of someone creative, political or relevant in the lexicon of life.

By Emma Sutcliffe on Dec 22, 2016

Yet in the medical and pharmaceutical world, this continual pounding was offset by my personal encounters with some outstanding people – whose deaths, or the work they did with the dying, taught me about how much more we can do to facilitate a better end of life for patients. After all, even when drugs cease to be useful, physical and emotional needs still persist.

It’s about the little things

An English geriatrician and campaigner for better patient care, Kate Granger, founded the ‘Hello my name is…’ campaign in the UK. Designed to encourage doctors to introduce themselves to patients as a priority – rather than wading into HCP-only exchange of facts and figures – it was as Kate herself described when she herself transitioned from doctor to cancer patient: to avoid patients feeling “like a shapeless pleb on a bed.”

Here’s one merit then of social media for patient storytelling and giving a patient a voice; I never met Kate in person, yet I had a close relationship with her - and I miss her daily tweets. After being part of my life for several years, she died on July 23^rd. Kate put a digitally-enhanced face on the pain of dying. Her candid communications about the things that matter at the end of life showed that we can better manage ‘A Good Death’. And her final tweets chronicle how dreadful and difficult it was for her HCPs to get her pain under control:

“I just wake up every day wishing this wasn’t happening, and then the pain and nausea kick in, and I’m reminded.” “I’m suffering too much at the moment. It’s just day after day of endless pain. I just can’t take it”. And then, when Kate was in a hospice, pain being managed, her final days were spent with her husband. One of her last tweets resonates: “I’ve been in the bath! Long, hot, deep, bubbly, wallowy bath! It was lovely. Thank you to all the nurses who made it possible #littlethings.”

Because, for too many, the pain they are in at the end of their lives is the dreadful legacy that their family and loved ones are left with.

In May, I attended the SIP (Societal Impact of Pain) Annual Congress as a guest of Grunenthal Pharma, a company with an extensive portfolio and a 70-year history researching and developing pain medication. The SIP event brings together multiple patient organizations, researchers and physicians to try to communicate, exchange and collaborate on new solutions for the everyday reality of pain and the issues that are seldom discussed – such as end-of-life management. I learned that EU law restricts the pain relief that can be administered – because the medications are habit-forming. That was little comfort, particularly to one mother who had to fight hard for her 14-year old’s last few days of his life not to be excruciating ones.

Doctors described how terrifying it is to patients when they suggest opioids – the interpretation is that death is imminent once morphine is mentioned. The lack of an honest conversation about terminal care and the importance of pain management is alarming and means that for relatives the grief of losing a family member is worsened by their final memories being of torturous pain and desperately lobbying doctors for help rather than ‘the little things’ such as holding someone’s hand and helping them say a peaceful, pain-free goodbye. I managed to swap tweets with Kate from this parliamentary session – “HelloMyNameIs…” has just been described in parliament. She taught me that every communication about a patient need does count, will be heard by someone and every small act of kindness counts when you are in pain and dying. Physicians are taught to try to prolong life at all costs; we need to have a better dialogue about the toll of such costs on patients.

Life is a cabaret… and death is a game

In September, I ran workshops at a Teva-sponsored ‘communicology’ (communication in oncology) conference, and learned how we can better communicate with people with cancer about the things that matter to them beyond their therapies. One remarkable presentation included the ‘premiere’ of a new game; ‘My gift of grace: a conversation game for living and dying well’. A series of questions on cards that people play in small groups to enable a dialogue about death. Its creator, Dr Jeff Kohn, explained that his motivation was terminal cancer patients, who struggle to have timely conversations about their desires, either with HCPs or their families. The game, he says, is always difficult to start with, but the players are usually smiling – even laughing – once it’s underway. It encourages people to face the inevitability of a terminal disease, but gives everyone comfort that fears will be addressed.

Dr Kohn described how one particular question had a profound influence on how HCPs and relatives were able to collaborate for a patient’s last few days of life: “What three things do you want to tell us about your <Father> that are not medical?” The most common answer: “he was kind, he worked really hard, he was a really good Dad.”

Even the seasoned oncologists and pharmaceutical manufacturers were in tears. We all reached for our phones and started to message our loved ones. It’s true – we can have better conversations about death when we are encouraged to. And it hurts, but ‘communicology’ relieves the emotional pain.

Two other speakers, Professor Lesley Fallowfield and Dr Pauline Leonard, went on to explain how difficult it is for doctors to deliver sad, bad and difficult news to patients and their families. Data showed that 21% of HCPs find dealing with angry patients the most difficult part of their communication, and HCPs typically overestimate a survival prognosis if they know a patient well. Yes, doctors are human too – and they struggle with these conversations. But saying “nothing more can be done” is not true – doctors need to be encouraged to open up about both their own feelings and space needs to be given to let a patient ‘vent’. “We try to stem patients' tears, give them time to cry. But it is not a failure from a doctor if your patient needs to emote.”

You can live luminously with a disease death sentence

The last of my ‘death lessons’ from 2016 came in the form of ‘super-patient’ Emily Kramer, a cystic fibrosis sufferer who created a patient advocacy storm called ‘Emily’s Entourage’, leading to her and her fellow patients invited to speak to President Obama (twice) about raising more than $2m for research. Emily campaigns relentlessly, vigorously and luminously about being the best patient that she can be – doing her bit, staying as healthy as she can, and helping the pharmaceutical industry to align with her and develop better cures. Emily epitomizes what it means to be ‘super’, explaining, “managing CF is tough. There’s no way around that. The things that keep me motivated and engaged and empower me to rise above the adversity are community, purpose, and agency. The uncertainty of this life has taught me to not wait. You never know what the next day will bring. I try my hardest to seize opportunities when they present and make the most of them.”

This is patient-inspired R&D and advocacy at its very best. Cystic fibrosis is rare – really, a collection of 100 rare diseases due to the many gene mutations. People with CF have to be committed to physical therapy that can consume several hours a day; they are also susceptible to frequent lung infections, with function increasingly compromised. People with CF will usually die by the age of 40. However, a ‘death to the death sentence’ breakthrough arrived in the form of a gene-modifying drug from Vertex last year. I first met Emily at the Cambridge Rare Disease Conference, where I was a member of a patient-pharma roundtable. To be in the same room as Emily is to be profoundly influenced by her courage, but sadly for Emily, she is not one of the 8% with the gene mutation for which these recent drugs will work. She is “delighted for her friends, but watching jealously and trying to keep hopeful that [her] cure will come. Time is our intense enemy. Having the wrong gene mutation drives me to necessary activism.”

Working with ‘true Patient Opinion Leaders’ like Kate and Emily has been a great privilege in 2016. The only certain things in life are death and taxes – and, yes, change.

2016 has taken much and many – but it has also been the impetus we need. I look forward to being part of the continued movement for social health sharing, communicating and aligning. I’m far from despondent about the description of 2016 as being the ‘year of death’ because, like Emily, I try to remember that “this is a long game – and I need to sustain myself.”