Life is good when you talk about death
Cancer was a third wheel in my marriage almost from the beginning. My husband was diagnosed with advanced prostate cancer in 1996, three years into our marriage and three months after the birth of our first child.
Medical literature tells us that prostate cancer rarely occurs before age 40. This was little comfort to my then 39-year-old husband. The internet was relatively new and I read everything I could about prostate cancer. Based on the location, size, and aggressiveness of his tumor, the diagnosis was discouraging. He outlived the odds, but died in 2012. He was 55.
Being married to cancer was a 16 year journey through surgery, radiation, chemotherapy and experimental drugs. We had two more children (twins!) and my husband navigated a stint as a stay-at-home dad. Through it all, we focused on living, but living with cancer.
Although I lived with someone with a terminal illness for most of our marriage, we never talked about the possibility of his death. Important issues about his last days were never discussed, like when to stop treatment, whether to allow extraordinary measures, who should be at his bedside when he died and whether he wanted a wake. This lack of preparation was the result of a perfect storm: a patient who believed he could stay alive if he fought hard enough, physicians who did not want to take away hope and a young family that demanded most of our attention and energy. Our silent storm made his final days more difficult, and complicated my grief.
Now eight years of perspective later, my experience inspires me to share my story in order to help other people view end-of-life differently. I recently left a long career in legal services marketing, where I told stories about how a law firm can help its clients. I am using my lessons learned from my personal experience, my background in communications and my legal training to help others talk more openly about death.
My husband’s story is sadly not uncommon. Serious illness is often described as a battle and my husband prided himself on being a fighter. Denial was a powerful ally. In the midst of a punishing round of chemo, he was the guy who painted on his eyebrows and went to work. He had a high tolerance for pain and was willing to undergo difficult, even gruesome, procedures even when the possibility of a good result was small. Maybe that’s why he never accepted that he was dying. He did not want to give up the fight.
The medical team that cared for my husband was brilliant, compassionate and resourceful, but no one wanted to diminish his spirit and admit he was not going to survive. This is not a criticism. I was a willing participant in the charade and I regret it now. The medical team respected my husband’s wishes by denying the reality of his situation. But, as Atul Gawande writes: “People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions…” We needed someone to help us have hard discussions about his prognosis so that we could make better choices about his care. Long after the time that any treatment was viable, we relentlessly pursued futile efforts to stave off the inevitable.
It was a palliative care specialist brought in as a consult during one of my husband’s many hospitalizations who finally forced us to admit the truth. “Has the oncologist talked to you about where this is going?,” she asked me, out of earshot of my husband. “You know where this is going, right?” It was brutally frank, but not unkind. No, we had not talked about it. She organized a meeting with the oncologist and with prodding from the palliative care doctor, the oncologist told me what I already knew. There was no longer any treatment that would stop the cancer’s spread; it had already invaded several vital organs. Again, with prodding from the palliative care doctor, the oncologist conceded that death was likely less than six months away.
The oncologist then helped me tell Tom that treatment would be discontinued. “Then I will have to find another way to fight it,” my husband responded. The oncologist asked “How?” My husband’s reply was immediate, and certain: “With my mind.” I thought he was telling us that he would keep a positive attitude through the end of his life. But he was really telling us that he did not hear what his doctor said. He did not accept that he was dying.
The transition from active treatment to hospice care at home was just as jarring. My personal experience was that hospice is not particularly patient-centric. There are well-developed hospice protocols that are tried and true and wonderful. But, we didn’t always want to follow the rules. For example, the hospice protocol does not include administration of intra venous (IV) fluids which are limited because they prolong life. My husband was frequently dehydrated and that made him nauseated, but he had an implanted port for his chemo, so administering IV fluids was possible and made him feel better. I wanted to do it. But hospice would not help me. Instead, I was on my own to find a doctor who would prescribe IV fluid and I obtained it and administered it on my own.
It shouldn’t be this way. The patient’s voice should be at the center of all healthcare, but especially at the center of end-of-life care. As baby boomers face their own end-of-life journeys, certainly the generation that gave us rock and roll music will want to move to the beat of a different drum when it comes to dying. Hospice needs to listen to patients and be open to deviating from standard protocol. If something eases suffering, why should hospice deny it?
My husband was in at-home hospice care for four months. I was fortunate that I could take a leave from my job to care for him. We were alone early one morning when he began struggling to breathe. I thought this might be the end. He had been mostly sleeping for a few days. Swallowing was difficult. He could not speak. Did he want other family members to be present? He had never told me. Ultimately, I decided not to shatter the peace and quiet of that morning by calling the family. The windows were open and birds were singing. He looked skeletal and frail. I tried to tell him what he had meant to me and how I loved the life we created together, but he recoiled until I stopped talking. Still in denial.
Obituaries often say a person “died peacefully.” I wonder what that looks like. When death finally came for my husband it was violent. It was as if he was being pulled into a doorway but had propped his arms and legs on the door frame and was pulling with all his might in the other direction. I wasn’t sure what was happening and worried that there was something I should be doing to make it stop. I can only hope it was not as painful as it looked.
After my husband died, I carried significant guilt with my grief. Had I done enough to keep him alive? Was I right to make his final moments private, between the two of us? Had I said the right things as he drew his final breath? Had I somehow hastened his death because I didn’t believe in miracles? Had I done what he would have wanted for his burial? We never talked about any of it, so I will never know.
Since my husband’s death, my life will always be divided between “before” and “after.” Our three sons, who were all teenagers at the time, gave me purpose and meaning and reasons to smile. Family and friends helped us through our grief in more ways than I could ever recount or repay.
I believe my experience with dying and grief could have been better if we had talked more openly about death, if my husband had been helped to understand that his terminal illness was not a personal failure and if I had known his final wishes. Based on my experience, here are three things that need to change in order to transform the way we die:
1. Talking about end-of-life should be as natural as talking about our weekend plans. Death does not need to be scary. Death is the most human of all experiences. Our species has a 100% death rate. But we don’t talk about death, as if avoiding the topic will negate its inevitability. We should share our wishes for end-of-life long before it is imminent. And we should document our wishes so our families don’t have to guess. Our wishes should include not only the extraordinary measures we would want, or not want, but also our wishes for arrangements after we have died.
2. We must stop viewing illness as a fight and death as defeat. This can lead to perverse incentives, where patients pursue aggressive treatment that only prolongs suffering. Modern medicine has become so effective that doctors don’t want to admit that there are some problems they cannot fix. Admitting that someone cannot be cured is not a failure for the doctor or the patient. Choosing hospice or palliative care does not mean a person is “giving up.” Instead, it is exercising the ability to make choices about how best to live our final days.
3. Hospice care providers need to be flexible and modify their plans based on patients’ wishes. Palliative care and hospice care are relatively new medical disciplines and are still evolving. We need to temper “best practices” with an understanding that everyone is different. Hospice care is good at providing a wide range of services, from pain management to spiritual counseling, but should also include training for family members so that they can understand the mechanics of dying and what to expect when death comes.
Talking openly about death will make final days more peaceful for both patients and families and will help the grieving process. Let’s start talking about dying. It’s the best way for us to live.