Facing the difficult questions about death

  • In her mother’s footsteps: Alison Soares, chairwoman of the Friends of Hospice which supports Agape House, Bermuda’s first and only in-house hospice. Ms Soares’s mother, Hilary, nurse, founded Agape House in 1991 to care for people dying of HIV/Aids, but it is now open to all in need of end-of-life care (Photograph by Akil Simmons)
  • Family decisions: the late Bobby Lea McPhee and her daughters and granddaughters. From left, Nancy Wainwright, Heather VanSickle, Samantha Wainwright, Mrs McPhee and Robin Sidders, whose daughter stands in front (Photograph supplied)
  • A woman with vision: Agape House founder Hilary Soares, left, and her daughter, Alison Soares, who is now chairwoman of the hospice’s controlling charity, The Friends of Hospice (Photograph supplied)

Dying is something a lot of people would rather not think about. Robin Sidders had no choice. Doctors had recently told her mother, Bobby Lea McPhee, that she had stage four melanoma and that it was inoperable; that she had only a few weeks to live.

When the question came, Ms Sidders was ill-prepared.

“She wanted to know where I thought people went when they died,” she said. “It was night and pitch black outside. I was sleeping in a room with her and I thought she was asleep.

“Then, suddenly, I heard her voice in the darkness asking that question. It seemed very scary to be talking about it.”

Despite her unease, she was able to answer.

“I told her I don’t know where we go, but I want to believe that it is a happy place if you are at peace when you go.”

The 79-year-old died February 21, 2013, only seven weeks after she learnt she had cancer.

Looking back, Ms Sidders is glad they had that talk. She thinks it gave her mother some peace. “I think when people are terminally ill they are scared of dying,” she said. “It’s the unknown. I think they really want to talk about these things.”

She is urging other families to have difficult end-of-life conversations as part of Worldwide Hospice and Palliative Care Week.

“My mother and I had seven weeks to talk about what she wanted at the end of her life,” said Ms Sidders, interim executive director of Friends of Hospice, the charity that supports Agape House. “That didn’t seem like much time at all, but not everybody has even that.”

She has made a point of talking about it with her 16-year-old daughter, Macy.

“I am very open with her,” she said. “We talk generally about death. There have been kids her age who have died; we try to talk about how she feels about that.

“I’ve also talked about these issues with my siblings. I’ve talked over what I want to happen for Macy if I die suddenly. There are no guarantees. It’s better to talk about it, regardless of whether you are a healthy person. You never know what will happen.”

Such conversations are especially important for people with terminally ill friends or relatives, she said.

Among the many questions that need to be addressed are whether the patient wants to be resuscitated after a health crisis, who they want to make decisions about their care if they are unable and how they want to spend their final days.

Ms Sidders cautioned that such conversations only work if everyone involved is willing.

“Not everyone wants to talk about it,” she said. “And that’s OK.”

By the time most people reach Agape House, their families have come to terms with them dying, but some people are in denial right up until the end, she said.

To promote discussion, Friends of Hospice is screening the movie Wit, which follows the journey of a terminally ill cancer patient. “The movie is quite powerful and intense,” Ms Sidders said. “Four years ago, I don’t know if I could have watched it, but now I’m good.

“You can’t watch it without thinking about your own life and the people around you.

“It covers a lot of topics that are difficult to talk about.

“It talks about having advanced directives and being cared for and being treated with dignity when you can’t speak for yourself.”

Ms McPhee was able to tell her family what she wanted at the end of her life.

“She wanted to die at home,” Ms Sidders said. “We knew Agape House was an option, but she didn’t want that. “We had a Pals nurse who came to the house. Pals was wonderful.”

Because of those conversations, she’s confident her mother was at peace when she died, surrounded by family.

Ms McPhee’s children, Ms Sidders and siblings Steven McPhee, Heather VanSickle and Nancy Wainwright, and her five grandchildren rallied around her in her last days.

“There were even laughs,” Ms Sidders said. “I remember once she told my daughter Macy to hide in a basket of toys.

“Macy was 9 then. Then, my mother called Nancy in. Nancy came in and sat down, and then my daughter suddenly stood up.

“Nancy was so surprised and everyone laughed. That was my mother’s doing.”

She joined the Friends of Hospice board two years ago and became interim executive director in August. “When I took on the role, people often said to me, ‘Oh that must be so sad’. It’s really not. To me, Agape House is a happy place.”

Questions for families of the terminally ill

Nurse Hilary Soares founded Agape House in 1991 to care for people dying of HIV/Aids.

Today it is open to anyone who is terminally ill.

Ms Soares, who died of Lou Gehrig’s disease on August 19, 2011, spent the last weeks of her life at the Paget hospice.

Her daughter, Alison Soares, is now chairman of Friends of Hospice.

The charity is encouraging people with terminally ill friends or family to address the following questions in any end-of-life conversations:

1, What is your understanding of where you are and of your illness?

2, What are your fears or worries for the future?

3, What are your goals and priorities?

4, What outcomes are unacceptable to you? What are you willing to sacrifice and not?

5, What would a good day look like?

• Wit will screen at 6.30pm on Friday at Bermuda Underwater Exploration Institute. Admission is free. Visit