Six years ago at the age of 68 my father in law was diagnosed as having prostate cancer. A bone scan confirmed disseminated bony metastases.
Hormonal treatment meant that he could enjoy my wedding five months later, and we hoped for several years of good quality existence for him. Four months later, his backache became more troublesome, the disease was failing to respond to medical hormonal treatment, and his surgeon recommended orchidectomy. An anxious telephone call from his wife the day after the operation, telling us that he had weakness of his arms, set alarm bells ringing. Computed tomography confirmed spinal cord compression. During, or shortly after his operation, he had developed cervical compression of the cord, possibly precipitated by the necessary manipulation of the neck during intubation for the general anaesthetic. He was confined to strict bed rest, unable to sit up owing to the tenuous stability of his cervical spine. A course of radiotherapy failed to improve his condition. A neurosurgeon offered a stabilising operation which he accepted. However, he then became quadriplegic.
Overall, the medical staff, with exceptions, communicated poorly
Was the surgery worth while? Yes. It was a beneficial palliative procedure. Without it he would have spent the last few months with a severely unstable neck, afraid to move from the horizontal position for fear of a sudden and catastrophic end to his life. However, the weakness in all four limbs was still severe, and for practical purposes he was quadriplegic, unable even to scratch his nose. After a month’s convalescence in hospital, he spent a further month in the local cottage hospital, before returning home.
Throughout this time his wife spent most of the day at his bedside, assisting in all his nursing care. The bedroom was turned into a miniature hospital ward with a commode, hoist, airbed, basins, etc. The district nurses visited twice daily, and twilight and night nurses called regularly.
Although he bore his illness with equanimity, it did not prevent him suffering the emotions of denial, anger, intense frustration, and for several weeks a severe withdrawn depression, which thankfully responded to antidepressants.
He then had to be admitted with bladder outlet obstruction to his third hospital, a local district general hospital, returning home after a few days with a cumbersome continuous bladder irrigation apparatus. After 12 hours at home he developed acute gastrointestinal obstruction, again needing urgent hospital admission.
It quickly became obvious to me and my wife that he was dying. Unfortunately, this hospital dealt mainly with cold surgery, and staff were unaccustomed to dealing with many dying patients. The nursing care was excellent, but we had difficulty getting effective palliative medical treatment for the relief of his symptoms. Overall, the medical staff, with exceptions, communicated poorly, spent little time at the bedside, and were extremely parsimonious in their prescription of symptom relieving medication, despite having been told that both my wife and I had over four years’ experience in palliative medicine between us.
Eventually, we managed to get his intravenous drip stopped, and his drugs increased to a level where he remained comfortable until he died peacefully, with his wife and daughter at his bedside.
What lessons did we learn from the experience? Firstly, listen and communicate. Listen to the dying patients and their families. At no stage during my father in law’s final hospital stay did a doctor sit down and discuss his condition with us, to find out what he and we did or did not want at the end of his illness.
Secondly, treat symptoms actively. If a patient is in pain give him or her a pain killer. On one occasion it required a confrontational meeting with the ward sister and junior doctor to have a small dose of a pain killer prescribed for breakthrough pain. A wait of several hours for an analgesic dose to be administered for acute pain was not uncommon. On another occasion we had to wait several hours for the urological consultant to prescribe a necessary increase in syringe driver medication, which could have been ordered by a more junior doctor.
My father in law’s final four days were relatively uncomplicated. I dread to think what a similar patient without medical relatives would have suffered.
Nursing care at all stages was excellent, and the attention from the local general practice was prompt and efficient. But this competent medical care did not persist into the final week of his illness in hospital.
Now, more than ever, I am convinced of the continuing need for good palliative care education for medical students and junior medical staff, particularly in the acute general hospitals where most patients still die. It is unethical, unjust, and unfair to abandon the dying patients and their families to a prolonged and distressing death.
Footnotes
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