Designing and delivering training in palliative care, Karachi, Pakistan

Middle aged white woman with short white hair smiling with green trees behind her.
Dr Gill Horne 
GPNN Champion & Programme Director Care Services, Rowcroft Hospice.

I discovered that their staff had little or no prior palliative care training. Through video calls with one of their medical team to help prepare the training, I asked them to give me examples of the types of patients, diseases, and scenarios their staff were facing, being keen to design the training around their learning needs. Cases included for example a man in his 50s, who had severe epilepsy following an RTA, with left-sided paralysis, aphasia, complications of bedrest and his family not able to take him home; an elderly woman with oropharyngeal cancer, who had an emergency tracheostomy and no prior discussion about future plans and a patient with dementia, frailty and multiple chest infections. There was also a general concern about struggling to recruit and retain nurses in a mission hospital where conditions of work and pay were different to surrounding private and state-run hospitals.

I designed a 12-hour programme over three days. Together we agreed this would include the core tenets of palliative care: principles of palliative care; communication skills; recognising dying, pain, and symptom management – recognising they had little or no opioids available; spiritual care; grief, loss, and bereavement; self-care and compassion. We were told most of them had a good understanding of English, but once in country I was grateful that a retired Urdu speaking GP colleague, part of the team, was able to offer translation.

The workshops were designed for doctors, nurses, and technicians. We used interactive methods – something that is uncommon in Pakistan, where didactic delivery is the norm. We were thankful for Wi-Fi and access to a computer and screen, but warned of power failures – so we were prepared. All other resources were packed into my suitcase: paper, crayons, blue tack, poems, flip chart pens and other tools.

Some of the many challenges for staff in Karachi and in Pakistan is a lack of government provided reliable supplies of opioids. They had some oral mild-moderate opioids such as Tramadol available, and benzodiazepines such as Midazolam, and yet none of these were used subcutaneously at the end of life. In terms of communication skills training, as per my prior experience in other LMIC’s and Pakistan, its more common that the man of the family is informed of bad news and is the key decision-maker, rather than the patient. Relational autonomy is more important in their culture, nevertheless trainees welcomed learning about how to communicate news to the patient and family together and we discussed the merits of both types of autonomy.

Whilst in country, we were also able to offer some leadership and management advice in relation to supporting the head of nursing and we were invited to advise on their wish to develop a palliative care service.

Following positive feedback about the learning, including staff wanting to make their own plans about future care, and reports from one of their nurse trainers about gaining knowledge in interactive training methods, there were further impacts. These included for example, following the training in palliative care emergencies in the morning, that very afternoon a patient was diagnosed in the emergency department with Superior Vena Cava obstruction, the doctor suggested that having just been taught about this they were more easily able to recognise it. Reports since my return are that they have admitted several patients whom they recognised were dying and admitted them for palliative care. Excitingly, they are putting together a business proposal to creating a small palliative care unit within the hospital.

Gill is a Global Palliative Nursing Network (GPNN) Champion – if you are a nurse do think about joining the network.

Creative connections made at a conference

The impact and importance of creative arts as part of a holistic approach to treating what Dame Cicely Saunders described as Total Pain, was high on the agenda as delegates were treated to inspiring presentations full of real-life case studies demonstrating the effectiveness of several different approaches.

There were several recurring and strong themes for delegates to latch on to and to take back to their workplace, including the importance of creating a safe place for people to express themselves, even if that can take many different forms, the need to focus on what matters most to people rather than what the matter is with them, using creative arts to make a connection with people, the power of the metaphor and, last but not least, ensuring that as a professional working in palliative care you’re equipped to deal with the inevitable ‘tsunami of pain and suffering’ that comes with the job.

Mandy Bruce, Psychological and Spiritual Care team lead at St Christopher’s, opened the conference spelling out its intention; to give people a better understanding of the various ways of using creativity in palliative care to honour the patient experience.

She said that by understanding and treating, in the widest possible sense, people’s physical, psychological, spiritual and social pain, a multidisciplinary team can provide the right support at the right time.

“It’s human nature to resist pain and to try and push it away. We’re not trying to fix it but help them to turn towards it and create a space in which they can face it,” added Mandy.

“Creative therapies provide a safe and secure therapeutic space to explore what works, warts and all. We reach into pain and suffering in a way beyond words.”

Mandy and her colleague music therapist Sean Kenny shared four case studies illustrating the effectiveness of giving people a chance to experience what it means to be mortal. These included a A retired military man, bashful about his creative capabilities, who made an armadillo out of clay with a thick outer shell and a crumbling interior, an apt metaphor for how he felt. There was also a middle-aged man struggling with unresolved grief following his mother’s death and challenged by his own terminal diagnosis was helped to process his grief and pain and come to terms with own impending death through music, singing songs he sang with his mother and then recording a CD for each of his children.

Picking up on the theme of the safe and secure space, Art psychotherapist Deborah Kelly described the success of Groups in Nature, a weekly group she set up in the woods in Sussex.

Nature, Deborah said, provides a supportive and creative space for people. Just being in nature helps our mental and physical wellbeing and we’re hard-wired to love open spaces. And by witnessing the changing of the seasons we can reflect on the cycle of life and come to terms with the fact that we’re part of something much bigger than ourselves. People reported that it gave them a sense of belonging, relieved loneliness and helped them to understand where they would like to be cared for and to die.

Linsey Clark, Dance Movement Psychotherapist who works at Weston Hospice Care in Weston-Super-Mare, talked about a very different but equally secure, safe place for people to come together and express themselves – in a closed room in the hospice. In her talk: When the door is shut, we shut everything out, she shared the work she does introducing patients from the hospice to dance.

Everyone in the room has something significant in common, they can take comfort from it but don’t need to say it. Being together in a room with the door shut provides a further security – allowing them, Linsey says, to feel no limitations, to push boundaries, readying themselves for the unknown. She added that while she can’t change’s people’s outcomes or take their pain away, she can help change their experience of that pain.

Drama therapist Peter Darby-Knight highlighted the power of stories in the palliative care setting, in his talk, Once upon a time. With every example of the impact stories can have on people, he came back to the same powerful point – connection. Whether it’s the 4,000-year-old tale of Beauty and the Beast or the cowboy films featuring stoic, granite-jawed heroes like John Wayne and Clint Eastwood that his father so admired, we all find our own connection in stories.

Peter illustrated this with the story of a teenage boy struggling to come to terms with his mother’s terminal diagnosis and who was very reluctant to engage with him. They made a connection over a shared love of Star Wars and soon the boy had written a script full of emotion and grief, expressing his feeling in a way he most likely wouldn’t have without that connection with the story.

Sculptor Lisa Snook focused on connections too. She works with both bronze and clay and says that sculpture is something we feel, that connects to the body as we push and pull the clay. For her, she says, contact with the clay is like a form of meditation aided by the 17,000 touch receptors in our hands.

When clients come to her, Lisa says, they’re often stuck, but touching the clay can help them change that, to make sense of the world.

Find a safe, secure place is as important for professionals working in palliative care as it is for the people they work with, stressed Michael Kearney, who recently retired after more than 40 years working as a doctor in palliative care, starting out at St Christopher’s in the late 1970s.

Most of Michael’s presentation, delivered via video link from his home in California, was aimed at the health and social professionals in the room and designed to provide them with some tools to cope with the pandemic of burnout to which everyone is vulnerable, he said.

Deep security provides people with the resilience to stave off burnout’s three main symptoms; overwhelming exhaustion, depersonalisation and low personal accomplishment.

Take away that sense of deep security and, Michael said, we find a lot of unhappy people walking around with protected hearts, cut off from creativity.

Michael did offer some pathways back to security and that all-important resilience – all based around different models of self-care to help you live better with the tsunami of pain and suffering you come across. He used the metaphor of water to describe three ways of coping – traditional self-care which is like holding your breath under water and then come up for air. The second type is self-awareness self-care which is like breathing underwater. While the third approach, which came to Michael on a walk in his favourite Californian woods, involves letting the water, or experience, flow through you.

Hospice care fit for the future: a rehabilitative approach

If, like many health and social care professionals right now, you’re struggling to see quite how you and your organisation can provide personalised end of life care for a steadily increasing population of older people, you might very well want to join us for our annual Multi-Professional Academy event in October – which this year has an especially relevant and practical programme.

The challenges to health care systems across the world are ever growing. As medical care improves, people are living longer, frequently into late old age. Just like at every other stage of life, people approaching the end of life want to be treated as individuals and to enjoy as good a quality of life as possible. But the changing demographics are creating a serious challenge for all those working in healthcare, particularly for palliative care teams. This can lead to people feeling like they are in the ‘waiting room’ of death rather than living their lives.

Good palliative care enables a sharp focus on the individual and their level of function (physical, emotional and social). Effective and personalised goal setting can add value and quality to life, thereby improve wellbeing. Shrinking resources mean this formula for good care is becoming ever more challenging. Time pressures on staff are also leading to more transactional relationships with patients, in which care becomes task-oriented and algorithm led. As we lose sight of the individual, meaningful interactions fall by the wayside.

“It doesn’t matter if you have 5 minutes or 50 minutes, make them count.”

In a recent lecture, Max Chochinov, Professor of Psychiatry at the University of Manitoba, said: “It doesn’t matter if you have 5 minutes or 50 minutes, make them count.” This is a call to all professionals to make the most of each interaction we have, however big or small, we can still have the power to make sure the individual is heard and upheld as who they are.

What matters to you? is a movement that has been growing globally in recent years. It’s such a simple question to ask and one that enables us to put the person we’re supporting right at the centre of what we do. That’s why we celebrated What Matters To You Day here at St Christopher’s on 6 June, sharing the campaign’s key messages, asking the question and encouraging our staff and visitors to do the same.

What Matters to You

It’s important to realise this isn’t just a message for us as professionals. We should also be taking a moment to ask the people that matter to us, ‘what matters to you?’ We’ve also developed our new model of rehabilitative palliative care around this fundamental question, to include all our colleagues – making it relevant to all and everyone’s business, not just us physio and occupational therapists. That’s because this is something that we can all be getting involved in – supporting those around us to be the best that we can be.

This thinking isn’t new. The original model was formally published by Rebecca Tiberini and Heather Richardson in 2015 – Rehabilitative Palliative Care: Enabling People to Live Fully Until They Die. Any student of palliative care will know that the concept even pre-dates this, with its origins to be found in the work of St Christopher’s founder, Dame Cicely Saunders. “All the work of the professional team… is to enable the dying person to live until he dies, at his own maximal potential performing to the limit of his physical and mental capacity with control and independence whenever possible,” Dame Cicely wrote.

Some nursing colleagues will see similarities with the philosophy of the Lantern Model, understanding the importance of putting the person at the centre of everything we do as we strive to manage the needs of a growing population of older people with multiple co-morbidities.  

Keen to share this approach more widely, our Multi-Professional Academy Week will this year be dedicated to Rehabilitative Palliative Care. This annual event at St Christopher’s attracts people from all over the world who come and immerse themselves in what we do in an intensive five-day programme. The week is packed with workshops, presentations and practices. Participants also get the chance to witness care in action with our clinical teams.

Helena Talbot-Rice, our Rehabilitation and Wellbeing Consultant Lead, will provide attendees with a really solid grounding in, and exploration of, the model, how we can support people to be the best that they can be Throughout the week Helena and the team  will also work with peopleto think about how they can best apply the approach in their practice.

Among other highlights of the week, Heather Richardson, St Christopher’s Education, Research and End of Life Policy Lead, will facilitate sessions designed to inspire you to really grasp the wider context of the model and consider how you can influence and effect change, whatever your role. While Mary Hodgson, our Head of Community Action and Learning, and Libby Sallnow, Honorary Senior Clinical Lecturer at St Christopher’s, and co-author of The Lancet Commission on the Value of Death, will curate a discussion about the wider context of death, recognising its place as a social event.

In the current world economic climate, it’s more important than ever that we see death not as a failure of medical professionals, but a natural process supported by the people that matter most to us. By engaging with communities and reacquainting them with this process we enable people to talk about death, their death, and their wishes. We can then enable these wishes with health care interventions being the adjunct, not the main part of this story.

Rehabilitative Palliative Care

This Multi-Professional Academy will take you on a journey through all of these issues. It will challenge your thoughts, it will encourage you to challenge the processes in which you work and provide you with support and motivation to take your ideas back to your workplace and to make change, to make a real difference to the people that you support and the quality of their lives.

For more information about the Multi-Professional Academy, 9-13 October, and to secure your place, click here.

Gail Preston, Physiotherapist and Visiting Lecturer

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