Death must be confronted

CYNTHIA RAMSAY

In a night of many interesting and challenging ideas, one of the most interesting came late in the question period. Determining when a person has died is not just a matter of biology, but of choice. According to Dr. David Silver, the question to ask is, When is the person who is valuable and valued gone, even if the body remains alive?

Silver, chair in business and professional ethics and director of the W. Maurice Young Centre in Applied Ethics at the University of British Columbia, was one of five panelists participating in A Community Conversation about Death and Dying, hosted by Sisterhood of Temple Sholom, Women of Reform Judaism, at the synagogue. Organized by Sisterhood’s Brenda Karp, the event was hosted by CBC broadcaster Stephen Quinn and also featured Dr. Romayne Gallagher, head of the palliative care division of the department of community and family medicine at Providence Health Care; Rabbi Dan Moskovitz, senior rabbi at Temple Sholom; lawyer David Karp, partner at Myers, McMurdo and Karp; and Katherine Hammond, a registered nurse, whose family is fighting for their mother’s right to die. Some 350 people came to hear the conversation.

Noting that his eldest daughter’s introduction to death began with a pet snail, Silver said that he and his wife have explained death to their children. They understand that Mom and Dad will die and that they, too, will die one day, but they have much more to learn, he said, admitting that he, and most of us, “have not advanced far beyond this child’s relationship with death.”

But, he argued, we have an obligation to reach a more mature relationship with death, as well as with sex and spirituality, all of which inhabit “the wild places of our minds.” As Max, the protagonist in Maurice Sendak’s Where the Wild Things Are, tamed the wild things, we must try and tame our own monsters, such as loneliness, physical decline, loss of loved ones, and other such concerns, he said. “Each of these is a real and legitimate source of fear, but a trick to avoid terror is to name these fears, to separate them so that they do not confront us all at once.”

Silver’s core terror in facing death, he said, is saying goodbye to himself, “the person he has known the longest.” He has been searching for an answer to this fear by looking for role models. In this regard, he quoted from an interview Sendak did in 2012, the year he died, with NPR’s Terry Gross: “I have nothing now but praise for my life. I’m not unhappy. I cry a lot because I miss people. They die and I can’t stop them. They leave me and I love them more.... There are so many beautiful things in the world which I will have to leave when I die, but I’m ready, I’m ready, I’m ready.”

Preparation for death is important, agreed Gallagher. Avoidance is one way of dealing with the fear, she said, but most people seek a way of coping, trying to control as much as possible this part of their life. Palliative care, she stressed, is not “just for the dying,” it’s about living well as long you can. In palliative care, death is a part of life.

Gallagher referenced Dr. Elisabeth Kübler-Ross’ research on death, in particular the book Death: The Final Stage of Growth. She remarked how people near the end of life continue to grow spiritually and emotionally, despite the physical breakdown of their bodies. This growth, of course, is hard if you’re in pain, and one of palliative care’s aims is to relieve the suffering as much as possible, and help people deal with the pain that cannot be relieved.

People nearing the end of life are vulnerable, she continued – physically frail, worried about their loved ones, perhaps they have financial pressures – so when someone in this situation expresses a desire for the dying process to go faster, you need to ask them what it is that they are feeling. In most cases, she said, there is something that can be done to help with the acceptance of the changes that are occurring.

Unfortunately, palliative care is currently a patchwork of services, she said. More funding is needed and, Gallagher suggested, we’re perhaps spending too much on technology and finding cures and too little on figuring out how to live well with a chronic illness.

She advised that people help family members by making a plan, letting your family know how you would like things to progress. It won’t guarantee a good or easy death, she said, but it can ease the suffering and help you live as long as possible as well as possible.

“The most important thing we learn in life is that life is finite,” said Moskovitz when he took the mic. This is one of the lessons of Adam and Eve, who eat from the Tree of Knowledge and learn that they are mortal. God casts them out of the garden, telling them they should go and live their life. In this way, God does them a favor because the clock is now ticking for them. Not surprisingly, the first thing they do is have a child, “because the way that we try to instil our immortality is through our progeny ... and so that knowledge, that moment, is so critically embedded in our spiritual understanding and religious life and it’s a story that’s shared in many different forms amongst all the religious traditions.”

Knowing that we’re going to die helps us prioritize our choices, our purpose, said Moskovitz. There are many Jewish rituals connected with death, sitting shivah, the lighting of yahrzeit candles, Yom Kippur, for example – “all of this is so that death is not a stranger to us, but death is as much a part of life ... as birth is.”

Moskovitz referred to Ernest Becker’s The Denial of Death as one of the most important books he has ever read. Becker posited that, even though we know we are going to die, we don’t believe it: we deny death so that we don’t become paralyzed by fear. One of Becker’s astute observations, said Moskovitz, is that our obsession with not dying gets in the way of our fully living.

We don’t talk about death, or we whisper “cancer,” out of a superstition that it will bring death about. However, Judaism wants us to do the opposite, to do teshuvah (repentance) every day, for any day may be our last.

Martin Heidegger, in Being and Time, taught that, in order to live authentically, we need to confront death head on. The rabbi translated from the German, “If I take death into my life, acknowledge it and face it squarely, I will free myself from the anxiety of death, the pettiness of life and only then will I truly be free to become myself.”

One of the Jewish customs that embraces the reality that no one lives forever is that of ethical wills, said Moskovitz. They used to be part and parcel of life. Parents would write a letter to pass on values to their children and grandchildren, summing up what they had learned and what they wanted their children/grandchildren to know/live in their own lives. Ethical wills are not easy to write, he acknowledged – it is not easy to determine what is worth noting from one’s entire life – nor are they easy to read or to receive. He suggested that people imagine, if you had just one letter to write, to whom would it be addressed, and what would you like them to know?

About such things as ethical wills and personal directives, Karp pointed out in the Q&A that they are not legally binding. However, Gallagher noted, they are helpful to family, friends and caregivers, advising people to restrict the content to value matters rather than types of treatment, which may put caregivers in a difficult position.

In his talk, Karp spoke about some of the legal issues relevant to assisted suicide (suicide committed with the help of others) and euthanasia (the killing of another to relieve dire suffering). The latter is only legal in Belgium, the Netherlands and Luxembourg, he said, and assisted suicide only in Switzerland; there are assisted dying laws in Oregon, Washington and Vermont.

In Canada, he said, while suicide is no longer illegal, assisting a suicide is, and it carries a maximum jail sentence of 14 years. Parliament’s rationale, he explained, was a desire to “prevent people from assisting suicide [of] those that are not mentally capable of ... making their own decisions and, because of the values that Canadian people had, that society places on human life, which might easily be eroded ... if assistance in committing suicide were decriminalized.”

Karp said the seminal case in this matter was the 1993 Rodriguez v. British Columbia (Attorney General). In a 5-4 decision, the Supreme Court of Canada voted against terminally ill Sue Rodriguez’s right to assisted suicide.

Another important decision came from the B.C. Supreme Court in 2012, which “struck down the prohibition against physician-assisted suicide, calling the law discriminatory, disproportionate and over-broad.” Justice Lynn Smith suspended her ruling to give Parliament time to redraft the legislation, said Karp.

Within a month, however, the federal government appealed, arguing “that the current legislation is in place to protect the vulnerable who might be induced in moments of weakness to commit suicide and that the B.C. Supreme Court had no right to overrule Rodriguez....” (The case is called Lee Carter, et al., v. Attorney General of Canada, et al.)

The federal government won the appeal but the decision noted, “Should the Supreme Court of Canada revisit this issue ... consideration should be given to ... ‘constitutional exemption,’ ... essentially to say, we don’t agree with the law either but our hands are tied.... So, what that’s done in practical effect now is it’s re-opened the debate and left the door open to re-argue Rodriguez at the Supreme Court of Canada but, until then, physician-assisted suicide remains illegal in Canada.”

The Supreme Court of Canada agreed in January of this year to an appeal of the appeal, and so will be considering this issue again. Karp predicted that the court will rule against the government, given how Canadians’ views have changed and the experience of physician-assisted suicide where it is legal – there is no evidence of increased deaths among women, lower-income, uninsured and members of other vulnerable populations.

Hammond and her family have been fighting their own legal battle for her mother Margot Bentley’s right to die.

Hammond shared a bit about her mother’s life before she was diagnosed with Alzheimer’s in 1999. Eight years prior, Bentley wrote a one-page living will. In it, said Hammond, she wrote, “If there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die.” Her mother also indicated that she “wanted no nourishment or liquids” in this situation. “My mom did not fear death, she was a very spiritual person,” said Hammond. “What she did fear though was a long, slow, lingering, gradual degradation and, as she saw it, her loss of dignity, and she talked about this a lot with us, her family.”

Hammond described the mental and physical decline of her mother. In a care home for years now, her mother can’t walk, stand, she is unresponsive, kept alive with spoon-feeding. In 2011, said Hammond, the family showed the living will to the care home and, initially, they agreed to follow it, but Fraser Health (the regional authority) intervened and legal proceedings ensued, with the decision that her mother will be cared for despite her expressed wishes.

It’s a human rights issue, said Hammond, according to lawyer Kieren Bridge, who offered to represent her family on a pro bono basis. The family continues to fight – Hammond said she is sure they are doing the right thing.

As advice to others, she recommended that people fill out a representation agreement. If your doctor won’t honor your wishes, she said, find another one. She also recommended that people join the group Dying with Dignity.

After the Q&A, Sisterhood president Reesa Devlin closed the event, thanking the panel, Brenda Karp and other volunteers.

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