‘They are denied access’

WATERLOO REGION - Gayle Hamilton knew when she was diagnosed with a fatal brain tumour in August 2020 that she wanted the option of medical assistance in dying, and spoke to her family about it.

She continued to live her own home in Kitchener until a week before she died this past August, but when things just got too tough - she was falling and having trouble with her short-term memory - she applied to go into hospice to be able to access 24-hour compassionate care.

Hospice Wellington, in Guelph, offered her a spot on Aug. 1, but when the hospice learned she wanted to do an assessment - a formal test to ensure she met the criteria for medical assistance in dying - they would not take her," says her sister, Linda Hamilton, a retired doctor who lives in Nova Scotia.

Her family scrambled to find a place in another hospice, and Gayle was able to arrange her assessment on Aug. 4, and moved into Hospice Waterloo Region the next day.

Gayle stayed at the hospice for a week, slipping closer to death as the days passed. But because she was still determined to choose the time of her own death, the dying woman was forced to leave the hospice and return home to die.

She had to leave hospice in order to get it done," Linda Hamilton said. I was told by the director that you cannot have MAiD in this hospice. It's as simple as that."

The hospice helped arrange an ambulance transfer back to her home, and at the age of 59, a year after her diagnosis, Gayle died in her mother's old armchair, surrounded by family in a room filled with flowers from her garden.

Ultimately, it was a good end to her life, Linda says. But the fact she had to be moved out of hospice galls her.

They're being shuttled around, with the implication that they're doing something wrong," Linda says. It's implying that there's something wrong, with making people leave hospice. I don't think people need that when they're dying."

Gayle was lucky because she still had a home to return to, Linda says.

It boggles my mind that hospices, that are supposed to be providing quality end-of-life care, do not provide MAiD," Linda said.

People in Waterloo Region who want medical assistance in dying, or MAiD, are routinely denied access to hospice care, say the team of doctors and nurse practitioners who provide medical assistance in dying in the region.

Medical assistance in dying has been legal in Canada since June 2016. During that time, 134 people in Waterloo Region have received MAiD. To receive MAiD, a person must be an adult capable of making health care decisions, who has a serious and incurable disease or disability, and is in advanced decline.

If the hospices are aware of their MAiD request, they are denied access," says Martha Taylor, a doctor on the team. The five doctors and three or four nurse practitioners have all had the same experience, Taylor says. They'll say, You can't get in because you're asking for MAiD.' It's happening."

Four hospices serve Waterloo Region: Lisaard House in Cambridge and Innisfree House in Kitchener, which are jointly run and together have 16 beds; Hospice Waterloo Region, a 10-bed facility which opened near RIM Park in March 2021 and Hospice Wellington, with 10 beds in Guelph.

Hospice Wellington and Hospice Waterloo Region are clear to anyone considering going into their facility: MAiD is not provided on-site. If you choose MAiD, you will have to leave.

We do not accept referrals to our Houses for individuals actively seeking MAiD," says Lisaard and Innisfree on its website.

Hospice Wellington does not provide either the services or the facility for individuals to receive Medical Assistance in Dying," its policy says.

Lisaard and Innisfree is somewhat more flexible. Residents who choose MAiD will not be compelled to leave our hospice; however, if they choose an alternate location, we will support them by making transportation arrangements," it says on its website.

We do not send people away," said executive director Andrea Binkle. We've chosen not to do that. We respect people's autonomy and choice and we believe we need to help support them."

Taylor has three concerns with the hospices' position: patients who want MAiD are being denied access to the excellent, round-the-clock care that hospices provide; very sick people who are in hospice but then decide they want MAiD are being forced to leave the facility to get their wishes met; and she fears some people might be choosing to die earlier than they might otherwise because care needs can't be met at home, and access to hospice is being denied.

The care people receive in hospice is wonderful," Taylor stresses. And the staff are wonderful. I have nothing bad to say about the hospice care - it is fantastic. The care providers are second to none."

But, she argues, patients who want MAiD might not be getting access to that level of care, even if they need it.

It should be seamless," Taylor says. If you need hospice care and you want hospice care, then you get hospice care."

The hospices see the issue somewhat differently.

The boards of directors of all the local hospices very carefully crafted their policies on MAiD - Hospice Waterloo Region even consulted an ethicist.

They acknowledge that MAiD is a legal, legitimate choice, but say it is fundamentally different than hospices' palliative care philosophy.

A hospice provides a specific kind of service: care that neither prolongs life nor hastens a natural death, said Judy Nairn, the executive director of Hospice Waterloo Region.

Palliative care is much different than MAiD," said Pat Stuart, executive director of Hospice Wellington. It's totally different. It's two different concepts. We provide comfort and care and support to the end of a natural death. We do nothing to shorten life or to make it go longer."

The basic philosophy of the care we give is in supporting a natural death," Nairn said. People absolutely have a right and an option to request MAiD. That's not what you come here for."

Hospices provide one type of care for the dying, they say. That doesn't mean they have to provide all of them, says Nairn. You come to us for one type of an end of life experience and if you wanted a different type of end-of-life experience, you would have that service somewhere else."

There are lots of examples of health care providers who provide a particular type of service but not another," Nairn said. St. Mary's Hospital doesn't have a maternity ward. Nobody seems to think because services are is split that somehow there's a problem with that."

Hospice Wellington and Waterloo Region won't admit a patient who wants MAiD. But they also won't admit a patient who needs an IV, a respirator or tube feeding.

Some people and some families would never come here because for every last breath, they want to ensure that the person is given every fighting chance, and if their heart stops they want them to be resuscitated," Nairn said. You don't get that when you come here. If you want interventions, you go to the hospital."

Hospices say they are clear and upfront with prospective patients and their families about their policies on MAiD.

People understand before they come," Stuart says. It's very clear: it's not a service we provide."

A person who'd had an assessment and was eligible for MAiD could be admitted to Hospice Waterloo Region, as long as they understand MAiD isn't an option at the hospice, Nairn said.

If they've had their MAiD assessment and they say, I've decided I don't want to pursue it, I'd like to come to hospice for end of life,' we can say to them, All right, we can bring you in, we can support you. If you change your mind again and you decide you do want to pursue MAiD, just know you will be going home to have that done.' "

Hospice staff have been supportive and helpful in facilitating a patient being transferred home to die, Taylor said. But she thinks it's wrong to require a dying people to leave the hospice to get MAiD.

We try, when we provide MAiD, to have the procedure and experience be a peaceful transition for patients and their loved ones. Having a medical transfer back home on the day of one's death does not seem respectful or kind, let alone medically appropriate," Taylor said.

If you had to discharge this frail person home, the transport itself is punishment. It's mean, it's unkind to take someone out of their hospice room where their care needs are being met, to their home where they probably don't have a hospital bed. Sometimes you need to have a lift put into the home in order to move the person for this one procedure. That doesn't make sense."

Some patients need a lot of extra medication so they can be comfortable for the trip home, and that can mean they're not as present and aware in their final moments, which Taylor says is unnecessary and cruel.

Every movement, when someone lifts them, that is agonizing. To discharge that person home for their MAiD procedure is absolutely cruelty."

Nairn rejects the suggestion the hospice's policy is cruel. As long as a person has all the facts and knows the decision, I don't think it's cruel. I actually think it's more helpful. They have an understanding of all the possible outcomes and consequences and repercussions of their choice."

Because a person had to be competent and aware when they get MAiD, they're well enough to make the choice," Nairn says. It's not like you take someone who is actively dying and is unconscious and you're moving them out. It would be someone who is well enough to make the choice about MAiD."

A patient may want MAiD, but also require more care than they can get at home, Taylor says. Home care provides a limited number of hours of care, and not everyone can afford to pay for the extra help, she says. If a person needs 24-hour care, or two people to turn them, or the family caregiver is burnt out, doctors argue those patients should be able to go to hospice.

If patients aren't getting the care they need in the community, that's a system problem," says Stuart. That's not something that I can solve. I can only control the care and service and quality here."

Home care is now struggling," Nairn said. My personal worry is that people might be choosing MAiD because they can't get home care. That to me is a failure of the system."

Hospices believe the care they provide will ease patients' fears - about being a burden on their loved ones, about a lack of dignity or dying alone or in pain.

In quite a few cases," Binkle said, we've had residents who've come into the home who might have been thinking about MAiD, but once they were in the house they couldn't believe how well they were cared for and how comfortable they were and how dying wasn't as dramatic as they initially had thought or as scary."

Taylor has also had patients who she's assessed for MAiD, who later decide not to go through with it.

Since hospices get public funding, Taylor believes they should be required to admit any dying patient who needs their services, even those with MAiD.

Hospices are only partly funded by the province. Local donors cover more than half the operating costs of Hospice Waterloo Region, for instance.

The province says people can ask to receive medical assistance in dying in a hospital, long-term care home, hospice or their own home. But the Ministry of Health doesn't require all sites to provide MAiD, and cautions, some facilities may choose not to provide medical assistance in dying or have limitations on how it is provided." The province encourages" but does not require facilities to make this information available to patients.

Hospices say requests for MAiD are vanishingly rare Some residents at Lisaard and Innisfree have had medical assistance in dying, Binkle said, but not many. Less than a handful. Very, very few."

Hospice Wellington says it might get two MAiD inquiries a year and has only transferred a patient home to die once. Hospice Waterloo Region has had just one request in the eight months it has been open.

But MAiD advocates say that family members coping with a dying loved one might not feel able to speak up or to work through the logistics of a transfer out of hospice.

Both hospices and MAiD providers say their work aims to reduce suffering and fear from the inevitable process of dying. Both say they regularly see patients at the end of life in settings that are calm, supportive and full of love.

Providing MAiD is challenging, meaningful and rewarding work," Taylor says.

Gayle Hamilton was forced to leave hospice at the end of her life, but still ended up having a good death, Taylor says.

But that's not the point. The point is, she didn't have an option."

Catherine Thompson is a Waterloo Region-based reporter focusing on urban affairs for The Record. Reach her via email: cthompson@therecord.com