From the Heart - A Physician's Perspective
Issue 29, November 2009
The following speech was the closing address at the "Changing Minds Conference" in Lower Hutt on August 28, 2009.
"I have just heard Michael McCabe's beautiful paper "From the Heart - A Relative's Perspective". I am crying. I can hear the love beating its way out of the page, not just flowing, not unfolding, not just emerging. The grace of love beats itself wildly out of the page, leaps into my heart, cries out to my eyes and snuggles down. I am touched by his family story.
I am a palliative medicine physician who has cared for people who are dying at home, in hospital and in specialist palliative care units. Over the past 17 years, I have worked in Ireland, Scotland, the United States and now in Aotearoa/New Zealand. I will take the lead from Michael to tell you two stories about patients and reveal something of myself. In these stories I am touched and you will see how much I learn.
These stories are about listening; in every interaction listening to oneself and to the other. It is said that listening in medicine is not to be perceived as an act of benevolence borne out of compassion but instead approached as an essential skill that is as much science as art. These stories remind me of the exquisite character of listening, how one listens with the whole of oneself. Listening is a form of touch and viewed in that way is central to how we treat others with dignity and respect.
Visiting a patient at home
Should I write anything about the look away, the tear caught in the rim of an eye? Can I reveal in words the validity, the authenticity of this perfect moment? Fifty years married this coming Saturday, in an agricultural town in New Zealand. Two weeks ago, on my first visit to this home, she had wondered whether she could plan for the notice in the local newspaper, announcing the anniversary of which she was proud. He did not want her in the room during the visit of the lady doctor and nurse. She, with a long serving crutch, sits with one leg raised, recounting his attention to her in all her illnesses. She tries to understand his irritability with her now. He is in bed, a bed that almost fills the square cramped room. Noticeable are the very bright hot bulbs on the bed side table with tablet bottles and the prominent picture opposite him framed of a woman on her wedding day. A large liver and swollen leg from cancer hampers him. Yet he remains flirtatious and charming in a rough and tumble way with his nurse. His wife with her crutch waits in the outer room.
Two weeks later, now not much talk but still a muffled humorous invitation to the nurse seated on his bed to join him. In the square room, his daughter watches concerned and in tears. His wife, leaning on her crutch, asks my advice on how to handle this blue plastic urinal with the extendible spout, how to position it in the bed. I, in ignorance, defer to the nurse. Julie, the home care nurse, wisely suggests a hospital bed to ease care. Mrs McCardle hesitates, seeming not to understand – "A single bed?" she asks.
We already knew she was up three times last night to help him out of bed – she on a crutch, he with swollen legs and heavy. We knew they still slept together. Her daughter, oblivious, (unaware of her mother's disappointment at this suggestion) continues with queries about the remote control capabilities of such a bed. Time seemed to turn in slow motion. I watched this wife's eyes turn down, resist, complain and grieve. No words spoken. Two days before their 50th wedding anniversary was not the time to displace this woman; not the time to replace this woman with remote controlled efficiency. The man; the woman; the years of turmoil and resolution not now to end in a hospital bed.
On Saturday the prearranged announcement of their 50th wedding anniversary appeared in the local newspaper, the day after his death at home.
Visiting a patient in the hospital
During the school holidays I was with Zoe a cute, blond, big-eyed beauty of six years dressed in horizontal red striped leggings and a puff black warm jacket, playing with her cousins in Grandma's Hawkes Bay winter garden.
The following week I am back at work in the hospital. One of the patients is a prisoner. Prisoners would have had striped leggings in the past, perhaps like little Zoe's. At least in films that is how they are portrayed. Ike could not have looked worse in striped leggings than in the "hospital property" printed pseudo gown, fluttering without buttons at the back. They should ask when you are admitted not just about ethnicity and do you want to be resuscitated but also do you want to be in a well ventilated hospital property gown or would you prefer your own pyjamas? By the way the six foot eight prisoner in the hospital gown has two little daughters called Dancing Jewel and Sparkling Star who is Zoe's age. Their names are tattooed on each forearm, adding to the third tattoo "Gang land Forever".
Ike is six foot eight with a right leg doubling in width and a shaven head in American Indian style. We potter around him uncertainly as he is big, he is labelled a prisoner and he has two guards. We spend two hours discussing, planning, and deciding an analgesic regime. Then Ike asks my job description. "Does it include getting me a DVD player?" I would have laughed but was constrained by two tight guards; one eating a sandwich, the other reading a book. At this request one looked studiously at his sandwich, the other flicked his eyes upwards: tight and no chance of banter. Six foot eight, your tumour swelling your leg to the size of a tree trunk, you are writing on white paper. I could see from upside down "my darling" and neat close handwriting. There are two photos of this pretty woman on the side of his locker. I over heard the officer speaking unkindly about him to his prison boss on the phone: "He's on the hard stuff; they're just running around here at his beck and call". I could not bear to eavesdrop anymore - the massive leg, the "my darling" letter being written again, her photos. The stern sandwich eater of yesterday, smartly dressed in prison guard uniform came out of the room to tell me, "He doesn't get it, that it's all downhill from here, you need to talk to him in his own language." Bracelets were our euphemism for the clink clank of metal chain handcuffs.
Ike asked us for colouring books. Jackie suggested that we, the Palliative Care Team i.e. two nurses and the doctor go shopping for colouring books to a two dollar shop. Dragons would be a good option. Distracted temporarily by two dollar glitz we eventually make our way back to the hospital armed with stickers for his daughters and colouring books. Jackie and I deliver them all to our favourite patient of the day: six foot eight gentle giant of a prisoner cuffed to one guard, observed by another. He smiles broadly with gratitude and surprise.
Later we discovered he really wanted to copy dragons, not colour in dragons. He placed his children's drawings on the walls and hid his own talented art work in the locker. Later his leg broke. Well, not exactly his leg, not like his whole leg, just his femur eaten away by the bulky tumour wrapped around his hip.
Now I am back in Ireland. Ike, giant of a prisoner with a big tumour, you are many many miles away, never to see this country; I carry your battered dignity in memory here to Ireland. On this Atlantic seashore I will cast a stone in the sea for you. What else can I do? I remember the dying and the dead. I will build a mound of stones in honour of these people in Aotearoa.
I walk along the road. The fuchsia nod green and red in mist. There are enough red fuchsia heads to remember all the living and the dead. Tomorrow, August 15, is officially a Catholic holy day. Today is my holy day acknowledging the mystery of death, thousands whom I once knew. I walk on soft clean Atlantic cream silken sand. I collect stones half hand size in memory of each person. I pile them on a large flat stone at the water's edge with a small wooden stick for a sail. My stone boat created on sand with a wooden sail. Of such is mystery made...
The brown cool seaweed reminded me of the prisoner; reminded me of what my brother said. When he, a doctor is visiting a patient in a Dublin hospital, a prisoner handcuffed to guards, he tells the guards to leave; the patient's right to privacy. I have been awoken to the human right which I neglected. I am stunned into realisation how day after day I have visited this man, who has to speak of constipation, urination, pain, joy, sadness in front of varying prison guards. The silky soft feel of Atlantic seaweed reminded me; the warm gusty Atlantic breeze reminded me; the swimmers diving boldly into grey choppy waves reminded me. This freedom reminded me of my lack of respect for the six foot eight, father of two, sentenced to death by tumour, guest of the nation and prisoner of the state."
Dr Sinead Donnelly is a Consultant in Palliative Medicine at Wellington Regional Hospital. She uses documentary as a medium to present qualitative research. Four documentaries to date have been broadcast on national television in Ireland and a fifth documentary "At Home", filmed in New Zealand, is in post production.
Footnote: Names and places have been changed to protect privacy.