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SPPC Blog

An international exercise in compassion

Some people may think that I, and other ‘pioneers’ of hospice / palliative care, were alive with the dinosaurs.

Those far-off days brought much pleasure as well as challenge, though no-one could call them easy. Since we started planning in 1968 there have been many successes, and more to be proud of than we ever thought possible.

The comparative success of our ‘movement’ owes much to the national, international and professional organisations that have worked over the years to promote palliative care. In particular The International Association for Hospice and Palliative Care (IAHPC), has played a huge role, through its dedication to encouraging the development of palliative care worldwide.

The IAHPC has had its work cut out – so many people see palliative care as luxury care, and therefore very far down their priority list. This has meant endless negotiations with national and international leaders at political and professional levels, often with few results after 20 to 30 years.

Other major obstacles have been dose ceilings set for opioids and, persisting to this day in nearly half the countries of the world, the belief that opioids inevitably cause dependency addiction.

Now (I am tempted to say 'at long last' ) the WHO is throwing its authority and political influence behind us. The WHO Global Action Plan for the Prevention and Control of Non-Communicable Diseases 2013-2020 includes palliative care as one of the areas proposed to Member States. The WHO will soon publish a Global atlas of palliative care in collaboration with the Worldwide Palliative Care Alliance. And next week a report will be submitted to the WHO Executive Board on the growing need for palliative care services. The report broadens the scope of past efforts, to address the need for palliative care for people with conditions other than cancer.

But with this backing comes the reminder that 21 million people need palliative care each year and 42% of the world’s countries have no palliative care provision whatsoever.

We also know that only so called ’developed‘ countries teach palliative care in medical and nursing schools, that close on 50% of countries do not make opioids available, and that palliative care is a recognised specialty in only 10 countries.

Can we in Scotland do anything to help? The answer is a resounding YES!

  1. We can make provision for a doctor or nurse from a developing country to spend at least two weeks in a Scottish palliative care service. They should see everything we do, with 30 minutes each day spent with individual key members of our team in a Q&A session.

I know from experience this is an exhausting task for all concerned - it is not an excuse for a holiday for the visitor, and it brings no income to the unit. But the experience can be so valuable. If sufficient units were willing to do this it might attract funding from an interested charity.

  1. Secondly, palliative care doctors, funded by IAHPC, can go to a struggling unit / service abroad for a minimum of two weeks. There, they can demonstrate, teach and explain every aspect of palliation care provision to those working in that service

Once again this is no holiday – flights are at budget rate, accommodation basic, the hours are long – in fact this scheme almost came to a stop because so few doctors were prepared to make such sacrifices!

  1. My third suggestion is that we develop twinning schemes whereby units in a developing country are twinned with units of roughly similar size and staffing in a Scotland. Both parties would agree to be in regular and frequent contact with their ‘twin’, by email & Skype, as well as sharing with each other clinical problems, teaching material, specimen examinations papers, management problems, staff morale tips, and information about negotiations with government.

It is important to appreciate this is of most value when services are at roughly the same stage of development. It is a sharing exercise, both services being ready and eager to befriend and help each other.

A final challenging question:

Palliative care has always been an exercise in compassion, in caring for those in desperate need. Should that compassion not extend to our unseen friends abroad who are currently finding it even more difficult to get recognition than we did back in 1968?

I believe so.

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

An old man's anecdote

Forgive me if you have heard my story before. Old men tend to be anecdotal.

It concerns an old lady newly admitted to a hospice where I worked. As I did with all patients, I asked how she thought I might be able to help her on what she knew was her final journey.

"What do you expect of me?” I asked.

“If you had asked me that a year or more ago I would have said ‘Use some of those letters after your name. They tell me you are clever, well trained and well travelled and that your peers have honoured you.' But things are different now! What I want from you in the time that is left is….what shall I call it? Hand care.”

“Do you mean manicure?” I asked.

"Oh dear me no! I mean that when you come to see me I may hold your hand to feel safe, and when you come to me and find me asleep you will still touch my hand, and when my time comes one of these lovely nurses or you will hold it as I slip away. You see, dear, there comes a time when a loving hand is more useful than all those letters after your name!"

Busy we certainly are but never too busy to give a moment’s hand care.

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

I'm sorry to moan but...

I have been visiting terminally ill friends in Edinburgh though I suspect I might have had the same experience elsewhere. Two were in major NHS units, and one in a well-known hospice. Let me say at once that I have no doubt they have been thoroughly investigated, have been on the best therapeutic regimens, have had skilled care from nurses, physiotherapists, occupational therapists and social workers. What distressed me where the so-called “smaller things”. My experiences were those of a visitor (family or friend) and never once did I tell anyone that I was a retired doctor.

In the hospice I had hardly got in the door before I was welcomed by the receptionist, then by a nurse who took me to see my friend, offering me a tea or coffee, then telling that if I wanted to talk to any of the staff I had only to say so because they were all there to help me. A few minutes later she was back, putting her hand on my shoulder as I leant forward to sit closer to my friend- “Are you OK?” she asked. How often must it have been said in a busy hospice – and believe me it was busy – “How peaceful it feels!” When I left, another nurse walked to the door with me, asking if I was upset, if I wanted to speak to anyone, and reminding me that my friend would get the best care they could give. They kept that promise until he died.

In the general hospitals, no doubt looking lost or disorientated like many old men, no-one spoke to me when I went to the wards, no-one ever offered to tell me where my friends were and when I asked a nurse she pointed to a distant bed but said nothing. She had no speech problem because throughout all the time I was at my friend’s bedside she and her colleagues were chatting to each other at different bedsides, perhaps to interest or amuse hard-of-hearing patients because the conversation was all about their friends! On the way out on my first visit I asked if I might speak to someone who knew about my friend. "Sorry, none of us was here when he was admitted.” Quite what that had to do with their condition since admission days before, eluded me. A junior doctor was nearby so I coughed respectfully and asked if he had a minute to update me on my friend’s condition. "Nope! Sorry! Too busy." and he was off.

It struck me that many of the things that had disappointed me would never have come to light on a “tick box “ questionnaire yet they are central to compassionate care. CPD courses and evaluations for nurses or doctors might ensure they are up-to-date and “efficient” but how do you measure courtesy, empathy, compassion and sensitivity?

As you would expect, I think palliative care services have, by and large, got it right but, I wonder, have we failed to find how to teach and demonstrate what the public, and I, feel is missing in some big hospitals? We seem to have a some way to go!

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

Lessons from Africa

Professor Scott Murray, GP and St Columba’s Chair of Primary Palliative Care at the University of Edinburgh, shares some of his experiences from a recent trip to East Africa:

I am just back from amazing two weeks in East Africa. My son Andrew was taking on a series of epic challenges, which included running up Mt Kilimanjaro in a day (he took 7hrs 16 minutes from base camp), doing the same with Mt Kenya, and running over 50km every day for 18 days straight across East Africa.

My wife Mary and I helped with support, and like Andrew did a bit of running, and went up Mt Longonot (2786 metres) to raise money and awareness for the African Palliative Care Association. (Donations are extremely welcome.)

In addition to seeing some incredible sights (and getting a puncture next to a pride of lions), East Africa offered an opportunity to learn and share knowledge.

Andrew works as a Sports Medicine doctor and spent time learning from Olympic Champions, World Record holders and World Champions to unpick why Kenyans are so good at distance running- the village of Iten won more medals at the last Athletics World Championships than China and the UK combined. The universal opinion was it was not due to genetics, but due to a range of population factors (the Kenyan kids are more fit and fewer are overweight) and their top athletes’ sheer determination to do everything it takes to be a champion, maintaining a clear focus and involving the right people.

Our palliative care team in Edinburgh has a UK government grant to help train doctors and nurses in 12 African countries in palliative care, and funds from this run will help ensure there is morphine to be prescribed. The Kenya Palliative Care Association were exceptionally welcoming, and we visited two hospitals to encourage palliative care staff: at Chogoria where I used to work, (see photo of the team there) and in Eldoret near Iten, the village of champions.

Visiting with the Palliative Care service Chogoria HospitalFor palliative care to succeed in Africa much effort will be needed due to the lack of funds for equipment and medicines. But just as in running they have many resources to call on: neighbours and local communities supporting each-other, a willingness to face up to the inevitability of death and dying, and spiritual support from many church groups. Many people are still dying in pain in Africa, but many countries like Kenya and Uganda are achieving notable successes with visionaries introducing palliative care in nursing and medical training, and making morphine available.

We in “developed countries” can learn much from Africa about how neighbours and local communities and churches can support and help people at the end of life die with dignity among their family. We must help individuals and local communities cheer people on at the finishing line of their race. And in the meantime we can help by getting pain relief to people who are suffering unnecessarily by training local leaders to train local staff.

Reflections of a Hospice Chaplain

Reverend Stuart Coates recently retired as Chaplain of Strathcarron Hospice. One of the 'founding fathers' of the SPPC, he has been an active and valued member of SPPC groups and the wider palliative care community throughout his career. Though retired from the Hospice, he continues his role as Chair of the Forth Valley Spiritual Care Committee and his interest in the Cross Party Group in the Scottish Parliament on Palliative Care.

Within this blog, Rev Coates shares some reflections on his 27 years as a Hospice Chaplain in Scotland...

It is hard to imagine that it’s 27 years since I was appointed as first full-time Hospice Chaplain in Scotland!

The normal arrangement for health care chaplains at the time was that they were employed by the Church of Scotland, but Strathcarron Hospice broke new ground by employing me directly. This may seem a small matter, but it turned out to be a pioneering step now implemented throughout healthcare chaplaincy across Scotland, and maybe mirrors the transition of focus from religious care to spiritual care by which chaplaincy has become increasingly characterised.

I have always felt the task of offering spiritual care to be demanding and rewarding in equal measure. My initial mindset was that I might occupy the post for a few years before returning to parish ministry. However, my experience of multi-professional collaboration in palliative care prompted me to feel that this area of work carries a privilege which it would be hard to imagine in other settings.

My learning curve has focused on finding creative space to learn from patients and colleagues how the former’s goals can best be realized. I have been reminded of the qualities of partnership between caring professions which has always had a unique influence on the best kind of holistic care.

I call to mind a Sunday afternoon in December 1991 when a very small number of us gathered in Perth to inaugurate the Scottish Partnership in order to promote these qualities, both professionally and in the shaping of policy for palliative care.

Alongside a growing confidence in the promotion and delivery of spiritual care, the unique place remains for chaplains, in collaboration with religious, community and life stance groups, to ensure that the religious needs of patients, their families and caregivers are addressed.

I have always been fascinated by the manner in which these needs – sometimes along with a patient’s belief or life stance – can be subject to change in the face of crisis or life-threatening illness. The best deployment of spiritual care involves being attuned, sensitive and responsive to this potential for change, and to the opportunities for exploration which a spiritual crisis can bring about.

I guess that the indefinable nature of spiritual care could lead to suspicion - eg: 'what do chaplains actually do?' with consequential questions such as: 'when a chaplain is made privy through pastoral conversation to uniquely personal confidences, what place is there (if any) for these to be shared?'

In reflecting on the latter question I am prompted to consider the meaning of words which we use in this sphere of health care - 'palliative' and its etymological cousin 'chaplain', both derived from the same Latin word pallium = shelter, whereby those undergoing crisis can feel confident of a safe haven for their inmost thoughts and feelings.

Close to the core of the chaplaincy task is a creative inner dialogue balanced between two tasks outlined above: on the one hand of collaborating in a multi-disciplinary team, and on the other of being a repository for people’s stories.

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