A Pillow for My Father

A few months after he completed chemotherapy and radiation for advanced lung cancer, my father continued to be held in the tight grip of pain in his right arm, shoulder, chest and neck. It was hard for him to find a comfortable position to lie down or sit up for any length of time because of the pain. My father had consented to the aggressive chemotherapy and radiation I think partly because the options he was presented with were to accept the aggressive treatment or do nothing. There were no intermediate solutions offered. I also think (though he never said it out loud) he held on to a small but persistent hope that this treatment would give the time and opportunity to complete some unfinished tasks that the diagnosis of stage 4 cancer had brought to an abrupt halt. He survived the treatment, but along with his hair, weight and appetite for food, he lost also the strength for physical movement, appetite for mental pursuits like reading and the comfort of being pain free.

While struggling to find a bearable position on the gray couch that had become his spot in the house, he complained of how hard the pillows felt on his head, where the hair was beginning to grow back after the ravages of chemotherapy. The pillows he complained about now were the same pillows he, and all of us, had slept on for years : rectangular bags of sturdy cotton and tightly stuffed with shredded sponge. They had not become harder over time, but my father had become a shadow of the tough, uncomplaining man that I had known, while growing up, with an incredible tolerance for physical discomfort. As I watched him struggling to find the least painful position on the couch that day, muttering about the hard pillows, I felt indescribably sad because he was in pain and incredibly helpless because I could not ease his suffering even with a decade of practising medicine under my belt.

A few days after witnessing his struggle to find comfort, on my way home from work, I happened to stop in Barbican Square at a shop that used to known as Azmart Pharmacy, but is now called Fontana Pharmacy. I was not shopping for anything in particular, but seeking a momentary escape from the sadness I carried with me daily over my father’s deteriorating condition. As I wandered through the aisles, I noticed that they were having a sale on pillows. On closer inspection I realised that these pillows were very different from the ones we had at home. They looked full and well stuffed, but contained a much softer filling than the shredded sponge. My fingers sank into the pillow as I picked it up to take a closer look, and I was surprised at how light it felt in my hands. I immediately decided to buy one for my father, as an alternative to the “hard pillow” that was giving him such grief. It felt like an action I could take instead of simply wallowing in sadness and helplessness.

Having made my purchase, I headed to my parents house, eager to present my father with his new pillow. He was awake and sitting up when I got to the house, and I pulled the pillow out of its bag with a flourish and handed it to him with a smile, saying “ I got you a new pillow to try”. My father took the pillow from me and his eyes widened as his hands sank into the softness, and he smiled in amazement and delight as he said “Oh this is a very soft pillow, very soft …oh this is very nice.” He then proceeded to call my mother to come and feel this wonderful soft pillow that Kanchi had brought for him. In short order the new pillow was extracted from its protective plastic bag and dressed in a clean fresh pillow case. The pillow was then placed on the couch on top of one of the “hard pillows” and my father assumed a reclining position to test his new “very soft” pillow. He closed his eyes, gave a little sigh as relief crept over his face, and he said “Oh this is much better, very comfortable. Thank you very much!” The purchase of the pillow, and witnessing the comfort it brought to my father gave me a brief respite from the sadness and helplessness that had become my constant daily companions.

In 2005, my father was given a diagnosis of stage 4 lung cancer by the specialist surgeon who drained the large fluid collection in his chest cavity that was compressed his lungs, compromised his breathing and heralded the presence of terminal disease. Then it is was referral to the oncologists for planning of chemotherapy and radiation treatment. Post-treatment, when the pain in his right arm got unbearable, he was referred to an anaesthesiologist who tried a nerve block when the non-opiod pain medications did not work. When that did not work, the anaesthesiologist sent my father to do a bone scan which revealed that tiny deposits of cancer in his spine and the base of his skull. What to do now?

Thus far in his approximately 7 month journey since the diagnosis of stage 4 cancer was made, the doctors who treated my father displayed about as much finesse as an elephant on a rampage in breaking bad news to my father. There was no time or space made available to digest the diagnosis before aggressive treatments were proposed. There was no discussion of the fact that no matter what path was taken the ultimate end would be death. In fact there was a reluctance to discuss frankly with him even the statistics for a positive response to the proposed aggressive treatment in cases of advanced cancer such as his. There was no acknowledgement, much less addressing of the incredible emotional toll hearing such news takes on the patient and his family. No mental health support was suggested. None of the doctors asked my father what he wanted to do, or what his priorities were. There was no offer or invitation by any of his official physicians to have a family meeting to discuss goals of care . Good palliative care could and would have addressed all of these issues and offered my father an option that lay between aggressive chemotherapy/ radiation and the doing nothing options that he was offered at the beginning of his journey. Alas palliative care was not really available in Jamaica at that time.

So now when my mother handed me the bone scan report and said with tears in her eyes “It’s not good news.” I decided that I was not going to let his doctors be the ones to break this final piece of bad news to him. So armed with only my heartfelt desire to offer him some relief from seemingly endless suffering, I sat in the bedroom with him and explained as best I could that the cancer had spread to his bones. I saw the tiny light of hope leave his eyes. All I could do was bear witness to it, and allow him a little time, space and my presence to digest this new turn of events.

Shortly after that bone scan, he was hospitalised to initiate morphine therapy. That came with all the stigma of this is “the last resort” and “nothing else we can do” that was attached to the prescription of morphine for cancer patients at that time. We then entered the next phase of his journey : days measured by the morphine dose intervals, and bouts of cold sweats and dizziness. There was also the constipation, the drowsiness and the dry mouth which causes the lips to stick to the teeth generating a peculiar but characteristic quality to the smile that my father still managed to generate for me and my sister. Even with that soft pillow to rest his head on, my father was far from comfortable, and we, his family, felt helpless as we watched him suffer. My mother managed to find an oncologist and pain management specialist who did home visits to come and see him. We did not know at the time but she also was trained in palliative care. My mother’s recollection of that visit was the immense sadness in the doctor’s face at my father’s state, and that she asked him what no other doctor thus far had asked him “Mr Bandara, what do you want to do?” According to my mother, he did not answer her question…perhaps his morphine addled brain and dry mouth prevented him from articulating a coherent response.

Thus, on our own, as a family, we fumbled our way through having those difficult conversations with my actively dying father. We ascertained that he wanted to die at home, and that he wanted to be cremated. We defined for ourselves what comfort care looked like. In addition to the soft pillow, and oxygen, the comfort care consisted of medication for the morphine side effects, and small bars of Dove chocolate. My sister and I lived in dread of that phone call in the middle of the night from my mother. I lived 10 minutes from my parents house, but my sister was working in Montego Bay at the time and was often not in Kingston. As his final days approached, well meaning family friends asked why not take him to hospital. In spite of his request to die at home, the pain of watching him suffer made my mother waver in the face this questioning. I think if I had not been uncharacteristically blunt in asking “Going to hospital to do what? He is dying and hospital can’t stop that” and firm on the “no hospital” stance, a bad situation could have been made worse. As it turned out, eventually my father drew his last breath peacefully in his own home, with his head resting comfortably on that soft pillow, with his wife and two daughters to bear witness to his departure. It was a life changing experience for us.

As I processed my grief over my father’s final illness and death, being a physician by myself, I could not help but see the gaps in the health care that was provided to him after being diagnosed with a terminal illness. Even though my father had access to specialists and expensive treatment, his suffering was really not addressed in a meaningful way by his doctors. So I directed my grief towards finding ways to address the suffering of the patients I saw who were at or approaching end of life. I tried to provide the patient and family time and space to process what was happening, with frank discussions about death and dying and goals of care, effective pain management, housecalls when needed, and the reassurance and option to draw the last breath at home, with loved ones around them. Many of the patients I saw had far less access to the kind specialist care that my father received yet my mostly self taught attempts to relieve suffering enabled many patients to draw their last breath comfortably and peacefully at home. It also provided the family of the dying an opportunity to actively participate in the process of saying goodbye, and to be present in those last moments.

Thus the experience of losing my own father to cancer led me to an area of medicine known as palliative care. It was in one of the first workshops I attended that I heard the first presenter define palliative care as “a response to suffering”. That definition also I think articulates a primary goal of the practice of medicine, and it resonates with me because ultimately the reason I became a physician was to relieve suffering. Today palliative care is far more accessible than it was a decade and a half ago when my father would have benefited from it. Yet in order for it to become universally available and accessible, we all need to first understand that in the course of a normal lifespan everyone will experience the loss of a loved one. With the worldwide explosion of chronic non-communicable diseases many more people will experience prolonged suffering before death. Access to good palliative care therefore is as important as access to immunisation and maternal health care in preventing unnecessary suffering. We need to start a conversation about palliative care that will ultimately lead to the establishment of public policy, training of providers, provision of the infrastructure and a population that is well informed on this important component of health care. We all need to understand that although death is ultimately unavoidable, with good palliative care, we can control the quality of those final years, months, weeks, days and hours of our lives. Palliative care is not about dying as much as it is about living the rest of one’s life as fully as possible, with or without illness.

Imagine a world where people are offered a palliative care consultation as routine management at the time of diagnosis of a serious illness. Imagine a world where suffering is relieved through clear compassionate communication, and carefully selected medical and non-medical interventions to address the many causes of suffering. Such a world requires a change in the way we think about dying and “rest of life” care. My experience with my dying father changed my way of thinking, and thus my way of doing. I share the story of my father’s pillow in the hope that it will challenge and inspire others to create a world where we can provide more than just a pillow to make the inevitable journey to end of life as peaceful as possible.

8 thoughts on “A Pillow for My Father

  1. Paulette Kerr

    Thanks for sharing this beautiful story of the life of a mentor and colleague. I remember him as a strong and ethical professional , always with a word of encouragement and always with sound advice re work.

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  2. Claudette Williams

    I’m so glad Kanchi has shared the moving backstory of her Dad’s “transition” It has taken my thoughts along a new path. I am in the process of reconciling myself to the challenges of aging and coming to terms with my mortality.
    Death is the final frontier of Medical Science. Dying is the last leg of the journey to that final frontier. Accurate diagnoses and appropriate treatment are critical, but when all else fails then palliative care (in its fullness) must be paramount.
    Dr. Ira Byock wrote a book titled Dying Well. The takeaway is that Death is inevitable but suffering at the end of life is not. Unexpected death is always a possibility. But when one is facing impending death, “dying well” must be the primary focus.
    I’ve spent a lifetime fiercely focused on “living well.” I’ve depend on myself for much of that. I exercise, eat right, mitigate / eliminate stress and address medical issues early. But I realize that no matter how healthy I am now, my health is finite. In my dying I won’t be able to depend on myself alone any longer; I will have to depend on others. I must think about who is likely to be willing and able to help me “die well.”
    For some of us who have adult children, it is useful to remember that they might not have the time, ability or disposition to be physically there for us on the last leg of our journey.

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    1. Thank you Miss Claudette for your thoughtful comment…the issues you raise and the pathways your thoughts are following are exactly the kind of response I was aiming for in sharing this story…dying well can be something to aspire to.

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  3. This was beautiful Kanchi. Thank you so much for sharing your journey with your father and also highlighting some of the many challenges faced by persons faced with life limiting illness as well as the ones who journey with them. I too long for a world where we have Practitioners with better communication skills, where Palliative care is introduced at initial consultation and where advanced plans and/or wishes for our heath and end of life care are normalized and openly discussed long before they may possibly be needed. Looking forward to working with you to make this a reality in our island home!

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  4. Luanne Francis

    I know that you, Kanchi, are doing things in your own way to see that others benefit from your experience. I wonder however if sharing this blog with public media or medical association would not elevate the issue more for awareness and relationships building for the cause?

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    1. We are thinking along the same lines. I have shared this reflection with a palliative care group that I am a part of which comprises doctors, nurses, pharmacists and others…and they have shared it within their own groups, so the ripples are spreading outward. Even if everyone who reads it and is moved by it shares it with a group they are a part of, the conversation can be begun and sustained

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