Transplants and assisted dying: A family’s story

With a committee sitting in Ottawa for the purpose of drafting a framework upon which physician-assisted death legislation will be enacted, the recent letters on the subject and the opinion piece of March 19, it seems appropriate to relate our recent experience to the public.

It is not our intention to disparage the medical staff at hospice, as we recognize they were only doing their job by following existing protocol.

On Tuesday, March 15, we had to say goodbye to our 44-year-old daughter, Kirsten, after more than four days in Victoria Hospice under palliative care. Her journey was not a peaceful one — not for her and definitely not for her loved ones who watched over her from the morning of March 8 when, unresponsive, she was rushed to emergency at Royal Jubilee Hospital.

It was evident from the CAT scan that there was no way back for Kirsten. She had suffered a massive cerebral hemorrhage that had caused irreversible damage to her brain; only the most primitive part was still viable. It maintained her cardiopulmonary system so her vital organs continued to function.

The neurosurgeon advised us that there was nothing positive to be achieved through surgery, only the probability of barely existing, totally reliant on others in a care facility. Palliative care was deemed the only real option until Kirsten’s daughter asked if it would be possible to fulfil one of her mother’s longstanding wishes — to donate her organs should anything untoward happen to her.

Organ donation held special significance for our entire family because one of Kirsten’s nephews, our grandson, had to have a heart transplant at the age of four after Kawasaki disease had caused giant coronary aneurisms that ultimately led to cardiac arrest. With that in mind, Kirsten was sent to ICU, where she was put on life support with the hope that continued cranial swelling would render her brain-dead.

After a second CAT scan on Wednesday afternoon showed virtually no change, the intensivist advised us that Kirsten could well remain in her current state for an indeterminate length of time. None of us wanted to artificially extend her life so as to achieve her desire to donate. At the same time, it was not possible to accelerate her brain death due to legal and ethical restraints. In our opinion, these restrictions need to be re-examined in cases such as this.

Until this time, Kirsten had been receiving intravenous anesthetics fentanyl and propofol to allow for intubation, and morphine for pain. The dosage of morphine had started at 2.5 milligrams per hour, but due to her increasing discomfort the dose was raised, first to five and then 10 mg per hour. When the doctors suggested palliative care, they explained that Kirsten would be taken off IV morphine in lieu of a similar drug administered by sub-cutaneous injection through a butterfly site. The dosage would be of equal strength to the 10 mg of morphine per hour.

We understood that would continue to depress the respirations and reduce the oxygen going to her heart and other vital organs. It was on this understanding that we made the unanimous decision to take her off life support.

Kirsten was eventually moved to Victoria Hospice on the third floor of the Richmond Pavilion. Ironically, this was the same floor where her mother was born more than 60 years ago and was still the maternity ward when her mother graduated from the Royal Jubilee School of Nursing in 1971.

Because her mom and sister were both RNs, they knew how to determine what dose of Dilaudid, an opioid, equalled the morphine she had been on while in ICU. It is at this juncture that our expectations of the system were dashed.

When the first injection of Dilaudid was administered, Kirsten’s mother asked about the dosage. We were told two mg every four hours with the possibility of breakthrough doses as required. This was only 25 per cent of the IV morphine dose, so the physician on duty was challenged on the subject. The response was insulting and was non-compliant with the assurances we had been given by the doctors in ICU.

On March 14, a different hospice doctor called us together first to apologize for the predecessor’s behaviour and then to address our position on the dosage disparity. It became very clear to all of us that nothing would change. We were told in no uncertain terms that it was the mandate of hospice to keep a patient comfortable and pain-free so that death would occur as naturally as possible.

We asked if choking on one’s sputum to the point that a comatose patient sits up holding her chest as she gags was considered “comfortable and pain free,” something we had all seen occur more than once. The response was non-commital, so I felt obliged to relate to the doctor and the social worker beside me about my experience earlier that day.

I was awakened just before 4 a.m. by the noise of Kirsten’s breathing. Her physically and emotionally exhausted mom remained asleep and her kids had gone to find a place to sleep elsewhere in the facility where they would not be tormented by the raspy gurgling that accompanied each of their mom’s respirations.

I got up and went to her side where I sat on a chair and held her hand. I told her how much we all loved her and hated to see her struggle so long. I told her it would be OK for her to go, but she continued to gasp for breath. For the next four hours, I was basically alone with her. I started to think my anguish was not unlike that of Robert Latimer and how easy it would be for me to help my firstborn daughter break the shackles that bound her so fragilely to life.

In less than two minutes, I could have spared her any further indignity. But her children needed me; my wife and daughter needed me; my other grandchildren needed me. I could not take the risk.

Then it was her distraught mother who spoke up and related her inner feelings about the situation. Maybe she should go downtown and find a dealer who would sell her a syringe and some drugs laced with fentanyl so she could help our daughter. She said we don’t allow our pets to suffer such a fate.

After the meeting concluded, our other daughter was buttonholed outside the room and asked if there should be any concern about the presence of Kirsten’s parents in the room. If so, the risk-management team would be called. Translation: a security person would be present in the room. Our daughter advised there was no reason to worry.

Thankfully, our daughter’s journey came to an end about 12 hours later at 3:35 the next morning. She was able to donate her eyes for the benefit of possibly eight people, but the heart that proved so strong will never give another human being the gift of life. Likewise, her lungs, her liver and her kidneys were lost, as they slowly degenerated until they ultimately caused her death.

Kirsten was a uniquely caring human being. She loved her job as a geriatric-care aide working at Selkirk Care Facility since 2008. She, her co-workers and her patients made up a mutual admiration society. They all loved one another.

How fitting it would have been for her in passing to have helped other sick patients by giving them a better life with her organs, just like the little girl whose heart beats in the chest of her nephew. What an unnecessary waste.

David and Vicky Fowler live in Saanich.

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