Spencer was diagnosed with HIV in his 20s. He contracted it through contaminated tattoo needles in a correctional centre. He was a nice young man from a good family. He was raised by his grandmother. He had two very young children and a fiancé. He also had a whole lot of denial about his infection and he was not compliant with his medication. Over time, as he became more susceptible to diseases he would end up in Intensive Care. These admissions would take their toll on his body but he would always recover and leave the ICU, a little weaker and thinner. He would invariably leave the hospital against medical advice. This went on for years. His fiancé took the kids and left him. He became so weak that he moved in with his grandmother so she could care for him. He abused drugs to deal with his chronic poor health and physically painful life.
Now each time he had an admission, even to a medical unit, the doctors caring for him would discuss the fact that he could not be cured and that his non-compliance for all those years had made it so that he would never regain his previous quality of life. The doctors would ask him if he wanted to change his code status, to be a No CPR. As a Native Health Educator, he and I would talk about his pain, about yet another admission to the ICU and the invasiveness of it all. He told me he always felt as if he was being pressured to die. He told me that he could not do that to his grandmother or his kids, to just leave them.
We discussed doing an advanced directive. In part because Spencer wanted to designate his grandmother as his proxy, because given the legislation in the province, his fiancé felt she should be his decision maker whenever Spencer was incapacitated. Inevitably, the health care team would have to sift through old notes, discuss current relationships and always end up with Risk Management advising us his next of kin was his mother. Spencer did not want his mother to act on his behalf so he designated his grandmother as his decision maker. At first, Spencer did not want to complete a My Voice. He felt that he would recover and return home. I left the package with him to read. We revisited the topic regularly.
He returned to the ICU after kidney failure. This was a prolonged stay in the ICU. When he finally was transferred to a ward, he was 65 pounds, needed dialysis and it was clear from his physicians that he would not leave the hospital. An emergency meeting was held one day as Spencer had begun to bleed uncontrollably and lose consciousness. The family, including his grandmother held fast to the belief Spencer would recover, even if he needed the ICU again. Spencer did not seem so sure. A few days passed and he asked to meet with me and the elder from Native Health, privately. He had been reading the My Voice. The three of us discussed the document, and Spencer felt that he should complete it now. He did not want to return to the ICU but felt that even his proxy would choose that for him if he lost capacity. He also wanted to end dialysis and tube feeds. In short he had come to his end. He was clear in the fact that he did not want to disappoint his family. He was frightened to discuss this with his grandmother and kids. He was worried that they would not understand what he had gone through in the ICU last time and what he was feeling now. We met as a group and discussed his wishes. It was a very long conversation. At first the family was upset that he had made these choices. The document was passed around the group for two days. Copies were given to his proxy to show family who could not attend the meetings.
Spencer lost his voice a few days later. He would stare off into the distance. In the Native tradition, it is believed that a persons ancestors visit them at their end and that is who he was looking at. He could no longer communicate.
I was there when Spencer passed. His daughter, barely a teen asked his grandmother why the doctors were not helping her father anymore. His grandmother took out a folded, well-worn My Voice. It was the one designating what Spencer wanted for his care at the end. She took her grandbaby into her lap and read the page out loud to the group at bedside. Grandma asked me to explain to her granddaughter that this is what her father wanted, this was his dignity.
I did not speak a word. She simply took her fathers hand in her own, and said its ok dad, I get it.
Shared with the Advance Care Planning Program, Regina Qu’Appelle Health Region by a native health care consultant, 2012