Hospice care is not something that should warrant fear or sadness. When Kath Murray tells people what she does for a living, there’s always an awkward silence, a nod of understanding and the inevitable “it must be so hard” response.
“I’ve never had a job where I’ve laughed so much,” says Murray, a hospice nurse and palliative care educator in British Columbia. “The reality is unbelievable.”
It’s not what most of us imagine, and that’s exactly the problem.
Murray founded Life and Death Matters in 2005 to help health workers who work with the dying. The organization has grown to include resources for nursing students, long-term care facility employees and families to help them navigate dying care.
According to Murray, there’s a major misconception that prevents families from accessing care when they need it most: People think hospice means giving up.
“That’s the biggest myth,” says Murray. “But we’re actually good at keeping hope and reality at the same time.” Hospice is about living better, rather than giving it up completely.
What is hospice care?
Many people often think of palliative care and hospice care as the same thing. Palliative care can start from diagnosis and works together with curative treatments, symptom management and improves quality of life.
Hospice care is reserved for people with a terminal illness who usually have six months or less to live. It provides comprehensive comfort care for both the patient and their family.
Both types of care are designed to help you live better, not worse.
People usually enter hospice when they have less than six months to live. (Image via Getty Images)
Murray’s closeness to dying people allowed her to witness and learn from people facing and accepting their mortality.
“I learned from people who had time to think about what really mattered in their lives. It was never about fancy cars or designer labels,” she says. The job taught her something unexpected: deep gratitude for everyday things. “I remember leaving work on a rainy day and feeling so grateful just to have working arms and legs.”
When should families consider hospice?
Most families begin to consider hospice when everyday life becomes a struggle. Maybe someone can’t shower or cook for themselves. In some cases, their health became unpredictable, with good days followed by scary emergency room visits.
Other times, it is clear that more support is needed at home than the family can provide. Physical decline makes it obvious that something needs to change.
“It’s never too early to have these conversations,” says Murray. “And it’s not just cancer: we help with heart disease, COPD, dementia, diabetes.”
Unfortunately, access to hospice services varies across Canada, depending on where you live and the level of provincial funding. Most hospice facilities rely on volunteers to offset the costs of providing care to those in need.
I had a patient say to me, “It’s not death that scares me…it’s the dying part”
There can be some anxiety when patients enter hospice. Moreover, many people fear that it will be a painful process.
Hospice care may include pain management options for patients. (Image via Getty Images)
“I had a patient say to me, ‘It’s not the death that scares me…it’s the dying part,'” Murray recalls.
Many hospice care providers can help manage pain and discomfort with medication, but there is also an added element of emotional pain.
Death doesn’t look like the movies, but hospice teams often include counselors to help patients and families understand the dying process and help them prepare for what’s to come. Murray says only a small percentage of people will enter hospice and experience a steady decline in health until death; the rest will experience what she calls a “roller coaster.”
“Families get together to say goodbye and all of a sudden the person gets excited and says, ‘I’m not going anywhere,'” Murray explains, adding that it can be emotionally draining on families.
How to help someone
People often wonder how they can support families with a loved one in hospice. Death can be an uncomfortable subject, especially for people who have not yet experienced a significant loss. As I ask “what can I do to help?” may be well-intentioned, it does not alleviate the stress or pain they may experience.
Instead of asking a vague question, try to specify how you can help. Some examples include:
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– I’m bringing dinner on Tuesday.
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“Can I go shopping this week?”
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“I’m free to drive the kids to school.”
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“Here’s what I can do…what would help the most?”
These statements and questions help solve problems without creating more work for your friend or loved one.
Be specific when offering help to friends currently navigating hospice. (Image via Getty Images)
What – and what not – to say
When you visit someone who is seriously ill, words matter more than you think. Expressions that are meant to be comforting can make things more complicated. Instead of saying things like:
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“Everything happens for a reason.”
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“I’m in a better place now.”
You can be supportive by doing things like:
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Ask what they want to talk about
Sometimes they want to talk about their illness, other days they want to talk about anything but that.
“The most important thing? Follow their lead,” says Murray. “Some days they want to talk about their illness, other days they want to talk about anything but that.”
Support acceptance
Hospice care does not mean giving up hope. It’s about making the most of the time you have with dignity, support and with your family.
It’s about focusing on what matters most when time becomes precious. It’s about having honest conversations, creating meaningful moments, and sometimes finding more laughter and joy than anyone expects.
The goal is not to hasten death or to abandon any treatment. It’s about living as fully as possible, facing reality with courage and the right kind of support.
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