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At the end of the journey
The doctor/patient relationship is secondary to the relationship between two human beings.
Columns, Opinion
BY DR KANCHANA BANDARA-COORE  
October 21, 2024

At the end of the journey

 

The front door closed with a muffled thud, and then silence, like a soft blanket on a sleeping child, settled over the house.

I was alone at the bedside of Millicent, my patient, who was making her way through the end stages of advanced breast cancer. She lay on the big double bed, propped up against a mountain of assorted pillows, exhausted from the ordeal that her husband Henry and I had just put her through, to clean and dress the large bedsore she had developed over the past month from being bedridden.

Her eyes were closed and her lovely thick eyebrows were slightly furrowed. Each breath that left her body was marked by a hunching of her shoulders and accompanied by a lingering wheeze that bore testament to the lungs that were being invaded and conquered by cancer. Her legs lay lifeless under the blanket, further testament to the cancer that had conquered her spine and squeezed her spinal cord into submission.

Her hand was warm and soft in my hands, and as I held it she briefly opened her eyes and met mine gazing at her. Those eyes which were always twinkling now looked unnaturally bright, perhaps from the morphine that was keeping her pain at manageable levels. She looked at me in slight confusion as if to say, “Doc, what are you doing in my bedroom?” I squeezed her hand gently and reassured her that I was keeping her company until her husband returned, and encouraged her to get some rest. She nodded slightly and closed her eyes again.

The bedroom was cool and dimly lit, even in the midday sun, as the big glass windows were curtained on the outside with the lush green branches of the trees in her garden. The blanket of silence stirred a little as Millicent’s breathing resumed its wheezing cadence, and my eyes filled with tears as I watched the lovely woman beside me moving, breath by breath, closer to her inevitable end.

I stroked her hand gently as I blinked away the tears, and my mind went back to the events that began the journey that had led us to this point. In the summer of 2011 Millicent discovered a lump in her breast. I was out of office on vacation, and, being the proactive soul that she was, Millicent took the initiative to seek immediate attention.

So by the time I returned to work, she had done a mammogram, been referred for surgical review, and a date had been set to biopsy the lump. She was being managed at the University Hospital of the West Indies where she had been previously treated for other medical issues. The biopsy confirmed breast cancer. Millicent then matter-of-factly informed me that she was preparing for chemotherapy, and I applauded her swift action in getting the breast lump attended to and encouraged her to complete the treatment.

There was no official communication between me (as her family doctor) and the surgeon and haematologist that were managing her breast cancer. After the third dose of chemotherapy, Millicent came to see me and declared with her characteristic frank determination that she was going to stop the chemotherapy because the side effects were making her unable to function at work, and on top of that, the cost of purchasing the drugs through the private health-care system was challenging, to say the least. In her opinion, the doctors who were administering the chemo drugs did not seem to care about helping her to manage the side effects, and she had reached her limit.

I suggested to her that I could refer her to the our palliative care hospital, Hope Institute, where I was pretty sure she would be able to complete the chemo with better attention to managing side effects. She agreed, and I asked her to get from the hospital copies of her pathology report as well as the results of any other tests that she had done so I could complete the referral to the new hospital.

A few days later her husband delivered a large manila envelope with the requested reports to me, and as I went through the reports my heart sank and my eyes filled. Millicent had stage 4 breast cancer. The tiny spots on her bone scan was the evidence that the cancer had already spread from her breast to her bones.

Uncertain if Millicent was fully aware of the extent of the cancer, I asked her to come in for a conversation before I completed the referral. She came in and we talked, and it turned out that she was very much aware that the cancer had spread far and wide. Her attitude was that as long as she felt strong, she was going to live her life as fully as possible and do whatever felt doable to maintain her strength. She refused to dwell in fear of what might come. That day Millicent comforted me, because I think I was more devastated than she was about her diagnosis.

With the support of the excellent palliative care team at Hope Institute, Millicent not only completed her chemotherapy but also tolerated surgery to fuse her spine when the bony metastasis threatened to fracture her vertebrae. She lived and loved and laughed with her family for eight years with stage 4 breast cancer, and she was able to see her children grow into adults.

Good palliative care gave her the opportunity to meet her goal of attaining the best quality of life for as long as possible. Ultimately we could not stop the cancer from squeezing her spinal cord and robbing her of the ability to walk. She could no longer make the steep climb from her house to the road in order to make the drive to see her doctors. So I went to see her at home.

Since that conversation eight years ago, when I found out that she had advanced breast cancer, we had not talked about dying, only about what needed to be done to live. During those final house calls, I asked her about unfinished business. Again, I learned that Millicent had been her customary proactive self. She reassured me that she and Henry had left nothing unsaid between them. She had shared her end of life plans with her one daughter as well as instructions on everything from where to find important documents to funeral arrangements, to ensuring that Henry had support. Her pastor had visited, and she had made her peace.

Once she realised that the only medical intervention we could offer was pain relief, she began praying for her release from this world… and refused to wallow in self-pity and hope for recovery of her physical body.

Thus it was that eight years after the discovery of that lump in her breast, I was sitting at her bedside, holding her hand and watching her as she approached the finish line of her life on Earth. We both knew this would be our last visit. As I again blinked away the tears and gazed at her sleeping face, I was reminded of a quote by Elizabeth Kubler-Ross: “People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light from within.”

While the darkness claimed Millicent’s physical body, making her eyes close and silencing her laughter with the labour of breathing, there was almost a glow emanating from her body as her soul sought its release from its broken human carriage to continue its journey in another realm and form. Being in her presence, in the soft silence, and bearing witness to her final journey, my sadness moved over to make space for an incredible sense of peace.

In spite of my tears, I was filled with gratitude for the opportunity to have been an active part of this beautiful soul’s human journey. It was the last time I saw her. She died at home a week later.

Losing a patient to death is always hard, but generally inevitable if you are a family doctor accompanying patients through all stages of life. Millicent taught me in a very practical way that the doctor-patient relationship is secondary to the relationship between two human beings. Both require mutual respect and open communication. In the doctor-patient relationship, it is important to realise one is caring for the person, not simply treating disease. It is the patient, not the disease, that determines the course of a life, even if the ultimate end is indeed death.

As physicians we have to accept that eventually all our patients, and indeed we ourselves, have to die. It is the one guarantee of life. Our goal cannot be to avoid death, because with patients like Millicent, the only way to do that is to avoid the patient. We cannot change the outcome, but we can change the path we take to reach that outcome. It is a lesson I have learned many times in my work as a family doctor, but never as beautifully taught as by Millicent.

Caring for her and bearing witness to her journey from diagnosis to death showed me that my goal as a physician is not to see death as failure but to support my patients to live while they complete their journeys on Earth. We call this palliative care, but really, it is simply practising compassionate medicine.

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