There is no ‘I’ without ‘we’ in palliative care

Marina Malthouse, Retired palliative care physician

Published in JHH16.2 – Faith, hope and love in healthcare

After 33 years of practising medicine, I stopped working in order to pick up other interests in my life.Although I remain involved academically with the MSc in Palliative Medicine at Cardiff University as a marker and supervisor and with the New School of Psychotherapy and Counselling in London, I now volunteer in Greece for several months a year working with refugees, kitchen gardening with permaculture and cooking in a community. I have discovered how the skills of a doctor are eminently transferable to the outer world.

Faith, hope and love can be associated with Dame Cicely Saunders who founded the modern hospice movement and medical specialty of palliative care. She has inspired givers and receivers of palliative care for decades to consciously consider humanity when people are dying. During my 20 years as a palliative care doctor, I learned about the lessons of life from patients, their families, and the people I worked with. In this article, I reflect on hospices as an environment, an organisation, and practices taking place within.

Faith, hope and love lie at the heart of palliative care. Dame Cicely Saunders founded this medical specialty through the modern hospice movement and although not present in the following lines, faith, hope and love infuse her often-quoted words:

You matter because you are. You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.

Not surprisingly the inescapable meaning emanating from these words have inspired both givers and receivers of palliative care for decades, because they insist that the essential elements of humanity remain consciously in place during the last chapter of people’s lives. Her endeavour was to seek a middle way that combined sound medicine with compassionate care (Clark, 2015). I owe 20 years of gratitude to this incredible woman, having entered the hospice environment as a novice in 1995 and exited as a passionate palliative care physician in 2015.

My place of work was Dorothy House Hospice near Bath. During every single one of those 20 years, I was learning from my relationships with patients, their families, and the people I worked with. They were my teachers and they had me sit through the classes of life. These encounters taught me – to name but a few things – about engaging with vulnerability, humility, the language of suffering, silence, humour despite adversity, intense sadness, eradicating assumptions, the individual and the collective, and curiosity. These lessons were not about gaining factual knowledge, but rather about acquiring a different kind of knowledge, a knowing that evolved out of engaging with suffering. In this line of work, suffering in the other needed to be met head-on. It infiltrated my own Other and as a consequence, shaped my mind, body and soul and over time, they adjusted my way of being.

Many of these lessons were hard, and during my early years at the hospice, I became acutely aware of a need to broaden out beyond what I had learnt as a medical student and since qualifying as a doctor 13 years earlier. I realised that to attend to the emotional and spiritual pain of people who were dying, I would have to study about the borderlands between medicine and humanity and to become a more therapeutic practitioner, I would need to find ways to reflect on my way of being human. Working in an environment that had honed its own culture of care was not going to be enough if I wanted to do my job well. Faith, hope and a passion for my work were essential during the years spent studying for the Diploma in Palliative Medicine, an MA in Medical Humanities at Swansea University, and an Education Doctorate in Narrative Inquiry at Bristol University.

The hospice environment

Inspired by Cicely Saunders, hospices drew on her faith, hope and love and although ‘motivated by her Christian beliefs, Saunders harnessed the love of people of other faiths – and none – to a neglected cause…she opened up a practical, personal, political and philosophical space for engaging with the care of the dying, and with death itself’ (Clark, 2015).

The design of physical space inside and outside a hospice is consciously considered, but so too is psychologically safe space, in the ways that staff and volunteers attend to patients and their families. Hospices know it’s essential to support their staff in order to create an environment akin to a sanctuary, where people who are suffering in ways that they have never known can be ‘taken in’. At Dorothy House Hospice, this attitude extends out into the community where much of their work also takes place. The hospice defines itself by its ethos of hands-on care that attends to detail and practises a willingness to never give up however difficult the challenge. Hospices also make a point of not only supporting but also educating other professionals involved in end of life care.

Hospice as an organization

Organisational compassion is essential for a hospice. In their book Awakening Compassion at Work, Worline and Dutton define compassion as a felt and enacted desire to alleviate suffering, and they identify an organisation’s responsibility for enabling their staff to achieve this. Although healthcare workers have to be responsible for their own self-care both inside and outside of work, the demanding context of their work means hospices have a duty to work very hard at organisational compassion or at least they should (though no doubt this happens more in some hospices than others).

One could argue that in medicine, kindness is a basic necessity, yet the all-embracing kindness I experienced when I first entered into hospice care was something I hadn’t known in my previous places of work. Yet when it’s made explicit, a culture of kindness improves staff retention, while also helping ensure that patients receive the best care possible, and that staff work well as a team. Staff members who are unhappy at work detract from the quality of care, and may not show respect for one another or allow unhurried time with patients and their families that’s needed if they are to talk openly with patients and their families about death and dying. These are essential, and must be achievable aims in hospices, because people come there searching for the kind of help described by Ballatt and Campling in their 2011 book:

Intelligent kindness surely demands that healthcare staff are authentic and help patients towards the truth, even if very gently in some instances. By encouraging people to face the inevitable reality of death and think through and discuss various end-of-life scenarios, the unhelpful taboo on death may begin to lessen (p121)

I have no doubt that, because rooted in each of us was a desire to be authentic with the patients and their families we attended to, the people I worked with shared the common goal of compassionate care. This sense of kinship among us that arose from knowing that any one of our patients could be us, or someone close to us; from recognising and acknowledging that we were all human beings whose lives too would one day end in death. Within our organisation, safe space had to be created for this vulnerability to be expressed, and for trusting relationships to be nurtured. Achieving such intimacy is no easy task, neither in a staff group where strangers are meeting strangers, nor when patients and their families encounter unfamiliar healthcare staff within the hospice or in their community settings.

The practice within a hospice

During my last few years at the hospice, I started a writing group with a few nurses, another doctor, and our art therapist. Some of the group have left but we have newcomers, and so we continue to write. When we first started the group, as a way of bonding around our insecurities about writing we wrote of our experiences at work. I have included below three of my own stories that I’ve adapted for this article in the hope that they offer readers a window into the day-to-day life of a palliative care doctor working in and from a hospice. The stories are woven from an amalgamation of my experiences but the individual details are circumstantial and therefore anonymised. The first of these is about a patient and doctor meeting as strangers and how by engaging attentively, a different story of suffering emerges.

I parked, picked up the notes from the passenger seat and gave myself a few minutes to read through the patient’s details in the solitude of my car. A GP had asked for help with symptom control of a patient’s pain. As I read the letters and scans, I pieced together a medical history of a 40-year-old man with an aggressive osteosarcoma that had spread to his lungs and spine and who had recently been discharged from hospital. He was married with three children.

Jamie welcomed me into his room apologetically.As he spoke, his weakened upper limbs clumsily and awkwardly repositioned his laptop more centrally onto his now useless legs. He made out to reach for a pile of papers that lay on the bedside table but unable to stretch out his arms he had to move his whole torso forwards and sideways. I restrained myself from reaching over to save him this effort. Instead, I watched him painfully struggle to achieve this simple feat so that he himself might hand me his clinic letters from the specialists involved in his care. The most recent was from the neurosurgeon. Jamie read it out to me word by word which must have been difficult seeing as the surgeon declared that he was unable to offer this young man any further surgery.

Jamie’s previous career in project management was clearly evident as he stated his plans for yet more scans and consultations with their necessary transport arrangements. But he looked weary. Despite his cheery demeanour, his sunken eyes expressed a different mood that more closely reflected the unhappy scene that lay in front of me.

Seems you’ve had quite a time of it lately’, I said, acutely aware of the swell of empathy that was stirring within me. I wanted to cry but knew this wasn’t the time for pity or for him to bear my sadness.We stayed still, our silence filling a pool of unspoken words of sorrow. Jamie looked straight into my eyes.

‘I can’t say it’s been easy’, he said, but what else can I do if I want to keep on living? I returned his gaze and he took my silence as a cue to continue. ‘

To be honest, I’m an emotional wreck.Tired of all this, tired of thinking ahead, tired of being brave and strong – that’s all anyone ever says of me, my wife, my family, my friends, the carers. I can’t tell them how I really feel. My wife works all day and then gets her painting clothes on when she gets back as we’ve been trying to do this place up. I’d rather she sat with me here on my bed. Hold my hand maybe. I don’t get to choose how to spend my day or even what clothes to wear.’

It felt as if the two of us were inside an impenetrable bubble. Just him and me. His soulful descriptions of his present situation were richly spirited and articulated in a way that sucked me in to his world of imminent demise. ‘My wife looks tired. I think I’m an irritation for her judging from the expression on her face when I ask for yet another favour. I feel so useless.What will I be to her when I’m gone? I feel like I’m in pencil’, he said more softly. ‘Pencil?’ I asked. ‘Yes, pencil. I think I was in ink for her before but now I feel as if I’m in pencil, soon to be erased.’

I had completely lost track of time but as we rounded off our time together, I realised that Jamie hadn’t once mentioned the word pain.

This next story aims to depict how putting faith in trust enables vulnerability to shift from a position of weakness to one of safety and strength.

When we first met, you told me you weren’t a strong person and that you were bipolar.You said you felt uncomfortable in the hospice.You told me about your life and as we talked, I could see an area above your upper lip twitching and your petite body trembling. None of this was surprising as our meetings were about your beloved partner Tim who was dying in the hospice.The first time we met was in his room. He lay in his bed and we sat either side of him, each holding a hand that he had offered us, barely conscious but seeking touch.The next day, I greeted you, again in his room where you’d slept the night, your bed alongside his.While we talked his long, bony arm reached out through the bed rails to touch you.You leaned over the rail to embrace him but the structure of his high-tech airbed meant that your body couldn’t get close enough to his. So I suggested you climb into bed with him. And that is what you did.Your skin touched his while you caressed and comforted him. I felt your warmth.There you were in bed with your dying man, holding and cherishing him for as long as he remained alive.When I came back into the room after a couple of hours, the bed was a mass of tumbled sheets, the curtains still drawn tight as if night was still present.With Tim still in your arms, you calmly told me that this was the first time you’d been with someone as they died.

The third story aims to show that conscious acts of compassion within an organisation enable faith, hope and love to be expressed and maintained against all odds.

Her large round eyes glared straight at me as I walked into room 6 to meet this patient for the first time. ‘Hello’ I said while drawing up a chair towards her bedside. ‘Am I dying doctor? Am I dying soon?’ she asked straight out. ‘Is that what you’ve been thinking?’ I asked as she reached out for my hand. Gripping it tightly, she said: ‘I thought I was dying in the night, I was so terrified. I still am.What’s happening to me? I’m only 45 doctor, this isn’t right. I felt on my own last night, without my husband. I so want him here.’

Her enquiring eyes continued to hold my gaze. Her clammy, waxy complexion, her large distended abdomen, her tightly swollen legs spoke of an imminent death. Despite my 18 years in this specialty, I have never found this question easy to answer. I gently agreed with her hunch that she was now dying

How soon will that be?’ she asked. I gave my usual response unsure if I’m ever softening the blow or not, that it was hard to know exactly as everyone is different; it could be soon but it could also be a few days yet. ‘If you could tell me that I had 3 days, 6 hours and 30 minutes left to live, I could cope with that better but this not knowing is so awful.

A man that was obviously her husband walked into the room and went directly to the bedside to kiss his wife. His strong, sturdy body contrasted with hers that was barely clinging on to life. She hugged him tightly and sobbed into his sleeve for several minutes. She drew breath and said:

‘I’ve had enough. I’m so tired.’ ‘I know love’ he answered, ‘you can go now, it’s OK.You’ve fought so much and been so brave, you go now.’ ‘Oh I needed you to tell me that, I really did. But I don’t know how to die, how do I do it?’ ‘Just be at peace, be at peace’, he said as the tears rolled down his face.

She smiled and affirmed that their happy relationship had many good memories. His softness soothed her as if he had waved a magic wand over her, calming her terror into peace.As I walked down the corridor, people who passed smiled cheerily at me. I think I smiled back. I was aware that my step lacked its usual vigour. In the staff room, a colleague greeted me and asked how my morning was going. In truth, I felt as if my body had been blasted up against a wall. I am outstretched, immersed into the brickwork like a scene from a Tom and Jerry cartoon. I was stuck there for a while.The camaraderie with my colleagues comforts and helps me to peel away from the wall bringing me back to a firmer footing.

Ultimately, it was the aim of Cicely Saunders for palliative care to be about healing so that by attending to the mind, body and soul, suffering is diminished.

Healing a person does not always mean curing a disease. Sometimes healing means learning to care for others – finding new wholeness as a family – being reconciled. Or it can mean easing the pain of dying or allowing someone to die when the time comes.

Saunders (cited in Lucas, 2018, p135)

For any discipline in healthcare, to achieve this kind of care new skills have to be learnt. This will entail, either formally or informally, a conscious noticing of ourselves in relation to others whether in situations where we are the carers or receivers of care. As Lucas (2018) has written:

Healing comes from within; a process of inner change away from suffering. Healing is not about curing. It is possible to die healed. It is also possible to be cured but not healed (p136).

Since leaving medicine in 2015, I have spent time in Greece volunteering in refugee camps where people from Middle Eastern countries who have run from war and torture are in search of a safe haven and a better life. I don’t think any readers will be surprised to hear that there are many overlaps between palliative care and this type of aid work where faith, hope and love all stem from the common roots of our humanity.

References

  • Ballatt J, Campling P (2011) Intelligent kindness; reforming the culture of healthcare. Glasgow: RCPsych Publications, Bell and Bain Ltd.
  • Clark D (2015) Works of love: Cicely Saunders and the hospice movement. Available at: Open democracy.net (accessed 6 April 2019). Lucas V (2018) On healing and palliative care. European Journal of Palliative Care 25(3) 134–7.
  • Worline C, Dutton J (2017) Awakening compassion at work. The quiet power that elevates people and organisations. Oakland, CA: Berrett-Koehler.