They contacted the hospital’s ethics department, wondering if the tattoo could be considered an accurate representation of the patient’s wishes. To complicate matters, there was another case in which a man with a similar tattoo gave contradictory medical directions. He had lost a bet to friends when younger and didn’t think anyone would take the tattoo seriously.
Ultimately, the Miami hospital was able to find more commonly accepted legal documents supporting the elderly man’s directive. But there’s nothing satisfying about the ending of this story. It leads to more questions than answers—questions that can often make us uncomfortable. Despite their inherent awkwardness, discussions about end-of-life care (EOLC) are increasingly necessary.
In the last few years, a number of EOLC cases have made their way from hospitals to courtrooms and into the news. In June 2016, the federal government passed legislation allowing eligible adults to request medical assistance in dying (MAiD).* The Alzheimer Society of Canada expects diagnoses to increase by 65 per cent within the next 15 years. All of us will, at some point, be faced with end-of-life decisions. Many of us will have to help family members make decisions. Do we know what we want? Do we know what our loved ones want?
As part of my studies at the College for Officer Training, I spent some time researching EOLC issues for The Salvation Army Ethics Centre. I reached out to a few Salvationists with personal and professional experience in this area to hear their stories and begin a conversation.
A Haunting Experience
Dani Shaw works in the legal department at territorial headquarters. She has been involved in EOLC for two of her family members and anticipates soon being involved in care for others. In one situation, her role was to carry out her loved one’s wishes. In another, she found herself having to make medical decisions on her father’s behalf. The tension she felt around these decisions has stuck with her.
“If my father had said, before he was diagnosed with dementia, ‘If I get to a certain state, I want a medically assisted death,’ I don’t know that I could have carried that out,” she says.
“If someone wants to name you as their substitute, my recommendation would be to make sure you have lots of conversations with them beforehand about what their wishes are, what they would like to see happen at the end of life,” says Shaw. An advanced care directive assumes an obligation for the named representative to carry out the patient’s desires.
Laurie Read was a nurse manager in hospice and palliative care at Winnipeg’s Grace Hospital for a number of years, and currently serves on the board of Winnipeg Golden West Centennial Lodge. She helps people who are encountering EOLC issues by facilitating grief groups at her corps, Heritage Park Temple. Conversations around this topic are critical, she says, especially because “death happens at every stage of life, even at the time of birth.”
Regardless of stage, they are not easy conversations to have. Read recalls providing palliative care for a Christian patient who felt strongly that she should not take pain medication, believing that Christ’s suffering meant she shouldn’t be relieved of suffering. Read observed the strain this belief put on the patient’s husband and young children. During this difficult time, she worked with the family to try to find a solution.
“We tried to include her priest and others to see if there was a different way of looking at her understanding of her belief,” she says. “That was really hard for me. It was a haunting experience.”
Our Lives Have Meaning
Clearly, when end-of-life issues intersect with faith, significant tensions can arise. As a Salvation Army officer and medical doctor, Major (Dr.) Beverley Smith has a unique perspective. She told me about a woman who came into her care having been diagnosed with the motor neuron disease ALS. This woman had just watched her brother pass away after his struggle with the same disease. She was angry and seemed singularly focused on actively hastening her own death.
As both a matter of conscience and in accordance with the laws at the time, Major Smith and her team focused on alleviating the woman’s symptoms. But they also went a step further. They made sure the woman knew “she was valued and that we would love her unconditionally, no matter how she felt about herself, or what hand life dealt her,” Major Smith recalls.
As the team continued to provide her with the best care they could, she began to talk less and less about hastening her death. In fact, during the last weeks of her life, she began to express interest in continuing to live. She didn’t want to be sustained through artificial means, but she did want to live.
While in the care of Major Smith and her team, this woman underwent a dramatic change, from wanting to end her life to recognizing that her life had value, that she was an important member of the community. This is just one of many stories illustrating that “generally the people who choose MAiD don’t choose it because what they are suffering is unbearable,” says Major Smith. “They choose it because their life has lost meaning.”
Consistently, those I spoke with wanted anyone who had questions about EOLC to know there is hope beyond the grave, that there is a God who “is concerned about their dying as much as their living,” as Major Smith says. This is the opportunity we have as The Salvation Army. In our long-term care facilities, in our churches and in our personal relationships, we have a chance to reaffirm that God loves us, that our lives have meaning—even in our pain and suffering.
Caring for Caregivers
This message of hope isn’t just for those approaching the end of their lives. Gloria Woodland, an assistant professor at Booth University College and director of the chaplaincy program for ACTS Seminaries at Trinity Western University, attests that the end of life can also be a difficult time for the medical team, family and friends of those who are dying.
“Many will say it’s not just physically tiring, it’s emotionally and spiritually tiring,” she says. “So how do we come alongside that whole person and support them?”
Woodland is well known for talking about the importance of journeying alongside people. When you journey with someone, whether patient or caregiver, it’s not a matter of solving their problems. It’s meeting them where they are and standing with them while they encounter these difficult times. Journeying is about recognizing that someone’s identity is not limited to their current circumstance or care-giving relationship. Giving them opportunities to focus on their own needs, or a chance to talk about themselves, can go a long way.
“If they are working in the field, there could be vicarious trauma. You hear sad story after sad story after sad story. Eventually the sad stories become yours,” says Woodland. It’s not just those who are dying who need our support through these times.
In November 2017, a man was taken to hospital in critical condition with no family or friends to speak for him. His final moments were dictated by a tattoo and a signature scrawled on a document. I hope we can do better than that. I hope we can overcome the awkwardness of this subject so that we can speak with and, if necessary, on behalf of our loved ones.
For Further Reflection
If you don’t know where to start, begin by asking yourself some questions.
• How have I been affected by the death of loved ones?
• What do I want the end of my life to look like?
• What do I believe about life and death?
Take these questions to someone you trust and work through the answers.
Cadet Joel Torrens is a member of the Messengers of Compassion Session at the College for Officer Training in Winnipeg.
*The Salvation Army is committed to the inherent dignity of every human being throughout the entire continuum of life. We are dedicated to providing compassionate care to those at the end of their lives. Based on these beliefs, The Salvation Army will not perform medical assistance in dying at any of its ministry units.
Feature photo: © galitskaya/iStock.com