My wife, Suzanne, was 52 when she discovered a lump in her left breast. Within a day or two she was diagnosed with breast cancer, soon after that determined to be Stage III. She had surgery, chemotherapy and radiation over the next year.
Despite the treatments, Suzanne’s cancer spread and she was diagnosed as Stage IV cancer with lesions in her hip and ribs, and most worryingly in an upper vertebra and in her skull on the left side.
The 33 months that remained of Suzanne’s life had some joy and some sorrow--and then some unnecessary anguish in the final months because of a lack of adequate palliative counselling.
In that time, Suzanne had several rounds of chemo and several rounds of radiation, which were hard. But family life with our two teenage children continued in a surprisingly routine way until the last six months. Suzanne loved to travel, and although we had to cancel one trip because of treatment, and rescheduled some others, the two of us managed to get away to New Orleans, Charleston, Savannah, Washington, New York and Sedona.
Suzanne also took individual trips with our daughter to Banff to ski and with our son to Vancouver to see the Rugby Sevens. In the last year of her life, our son was stricken with grief. For our daughter, the hardest part came later, after her death. But with both of them Suzanne’s relationship deepened and became more open. She wrote and recorded letters for them to read and hear after her death.
Suzanne also loved our cottage, and we managed to spend the better part of her last three summers there. She read and did chores; we walked and talked and cooked; she swam; and we spent many happy but sorrow-tinged hours there with our kids and other family and friends
Suzanne’s medical care, in its acute phase, was always good and compassionately delivered, even if there were the occasional administration hiccups and miscommunication. But one huge flaw was that whenever Suzanne wanted to discuss the final stage of her life, she was redirected back to the next treatment or scan. Although she prepared a will, picked an inscription for her tombstone and taught me how to make the spaghetti sauce our son loves, the doctors never allowed her to prepare for the end stage of her disease.
“Why do you want to know that?” they’d ask. Or they’d say “We’re not there yet.”
Suzanne had many of the predictable questions. Would she feel pain? How long would it take? Would she be able to die at home? What decisions would she need to make. But those questions were always deflected.
When she was finally told “there is no more we can do” and was referred to palliative care, somehow the referral was not successful. We were left to speculate on the course of her disease by consulting Dr. Google. Suzanne never had a discussion with anyone on the goals of her care or any advanced care planning beyond uninformed discussions with me.
In the spring of her last year, Suzanne’s most optimistic ambitions – which seemed unrealistic to me at the time -- became to see our son’s high school graduation in June, spend time at the cottage in the summer, and have our wedding anniversary dinner in September.
Suzanne made it to the graduation, though she needed to exit the hot hall and rest outside for a while. She was able to swim at the cottage in July. And we had our anniversary dinner at a restaurant exactly one week before she died. Two days after that dinner she had a seizure and collapsed. I did not know what else to do, so I called 911. For a time, she was in a hallway on a gurney. No one wants their deathbed to be a gurney.
In her last five days, Suzanne was in five different beds in five different places, ending in a hospice. She saw at least five different doctors, only one of whom she had ever met before.
Neither of us had any idea that the withdrawal of food and hydration was common at the end of life. When I returned to the hospital on the day after Suzanne collapsed and discovered that hydration had been withdrawn, the only explanation I got was from a nurse who said it wasn’t on the chart.
Once she reached the hospice, the palliative physician said we needed to decide whether to give Suzanne medication to relieve her suffering, knowing that it would close the window on her contact with me and the children. This is something Suzanne and I might have reasonably discussed even ten days before. By the time we came to it, she was no longer capable of speech and I had to make the decision on my own.
A few hours before she died, our six-foot-five son threw himself into his mother’s bed and embraced her, setting off the bed-alarm. Suzanne was able in that moment to break through the medication and tell him she loved him. Not long afterwards, our daughter replaced him on the bed, and once again Suzanne was able to express her love. Suzanne died a good death, in the literal embrace of her family.
But the inability for the system to give us adequate palliative counselling took a toll of anguish on us, and probably on her too. I’ll never know whether she died feeling I had let her down by allowing it to happen in a hospice instead of our home.
There are too many lessons I learned during Suzanne’s illness to recount them all here. But I will mention two.
The first is about the seemingly overwhelming challenge of communicating with teenage children. We wanted to be honest with them, which we were, but we did not want them to be living every day in dread, and to the extent we could, we wanted to maintain an atmosphere of normalcy. Those are obviously contradictory goals. Eventually, we struck on a little maxim that helped us frame our discussions: Tell them what we know, not what we fear.
That’s not an easy rule to live by, of course, but it gives a lot of guidance. It isn’t always easy to separate the information doctors give from the feelings and fears it generates. But it is important for teenagers not to feel that information is being withheld from them. It is their lives too at stake. At the same time, they need the space to have their own feelings without the burden of supporting their parents.
In the last six months, Suzanne and I allowed the veneer of normalcy to slip—something we couldn’t have kept up anyway as Suzanne’s condition deteriorated. That was important for our daughter in particular, allowing her to set aside the small conflicts of adolescence and embrace her dying mother.
My other big takeaway is simple. The palliative discussion should not be left for when active care is over. Demand to have a palliative consultation from the moment you are diagnosed with a life-ending disease—or at least as soon as you are up to it. You may find there’s resistance from the doctors, but you have a right to talk these issues through and be prepared. Don’t let what happened to us happen to you.