What it’s really like to die at home in Ontario

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  • Fran Schmidt says:

    I was just wondering if you are aware of any research that supports a young person dying at home who has young children.

  • Jack says:

    We are in our 5th week of Palliative care for my 88 year old mom at her home. When she first got diagnosed with Esophageal Cancer, she was to pass within 48 hrs, going to the emergency. Anyhow, here we are almost 6 weeks later, though we would do anything to help our love ones die at home with dignity, this whole process is not easy. Stress and fights in my home is going on. Few good reasons for that, we have too many people sticking their noses in places they shouldn’t and want to take over, by wanting to make decisions for others. Let those who think they are helping and or they are just shit disturbers, let them know hit the road or stand back. You also get those you haven’t seen for years, they all come out of the woods. For me there are many issues with Palliative, good and stuff that needs tweaking:
    1)For those who depend on EI for help, 26 weeks of Compassion Care is not enough, specially when you are sharing it with other family members. Each family members should get the whole 26 weeks, if someones love one, lives that long. 2) There should be a meeting with the caring family members and the patient to speak about what is going to happen with Palliative care. 3) A over view on what is Palliative care and what is expected at home, before you leave the hospital to go home.4) If there is any legal Will, Power of Attorney, bring that out. Let the doctors and care givers and other on the team know, who are the family members and who to call and inform when issues and other stuff arise with love ones..

  • KEN SMITH says:

    Our father chose to die at home. It was bitter sweet. I was responsible for a lot of the pain he suffered moving him in bed with bone mets.
    As a paramedic my mother asked me to confirm his death the day he died. It caused personal suffering for 3 months and when I finally grieved it was explosive. And to think i was the ‘professional’s caregiver.
    I now work as a Community Paramedic and am intimately connected with my patients’ palliative and end-of-life care. I am better educated and have a different perspective.
    We do need higher training to deal with many in-home crises that are presently outside our scope of practice. To start, we need the MOH to look at this classification, accept it, and collaborate with Primary Caregivers (MDs, NPs) to create definitive directives for our practice.

  • Helen Thompson says:

    My husband and I are in our seventies, and while we are in reasonable health now, we are greatly worried about our future, thanks to the Ford government cuts here in Ontario. We can only hope wiser heads will soon prevail, as we are part of the leading edge of an aging population. Instead of cutting, health care spending should be a priority.

    • Mike says:

      Completely agree however young people with children have educational demands on the system of government in Ontario as well as many other interest groups and this gov’t as well as any gov’t has to balance everyone priorities and everyone’s priorities can be quite different and equally fair. Tough stuff.

  • Martina says:

    I recently cared for my sister who passed at whole. I didn’t realize I was doing so much good for her. I focused so much on how good/bad she was by the day, that I never looked at the overall affect. Thank you

  • Kitty says:

    My Father inlaw died at home with us. I love Kelley’s reply above it should be an expectation. We were blessed with his great doctor who was on the ball with his pain meds. My husband is also a para medic which definitely helped and CCAC was amazing at that time but has experienced cut backs since. Which is crazy really as the need is increasing. I think people need to be aware of what they are undertaking not be so hard on themselves when things don’t go as planned. In caring for both sets of parents over the years … know that you need to let care givers know that you are an active participant and you need to ask for and insist on whats best for your loved one. You don’t need to attack health care workers but ask questions and make suggestions that don’t make it sound like they don’t know what they are doing but let’s them know you are working hard to take care of your loved one and they will hopefully respect that. This has been my experience along with a healthy dose of prayer to help things along.

  • Helga Leith says:

    Sadly, there are not enough hospice spaces (beds) available. When my mom was nearing the end of her journey, she went into the hosp (where she did receive awesome care) and was on a waiting list for a bed at our local hospice, where she wanted to go to pass away in the trees. She passed away before she ever got there.

  • Julie Saeger Nierenberg says:

    Thank you for this excellent article. Mostly, my experience caregiving for my late husband at the end of his life was a well-supported one. The last two days of life he was in hospital, because I had no way to medicate him sufficiently at home and I needed that expert support. I was disappointed he couldn’t stay home to die, but I was also glad his distressing symptoms were relieved at the hospital. Our community-based palliative care team in North York offered many kinds of support services. My husband required daily IV hydration for over six months. We had good nursing support for that, as well as an amazing palliative care physician who visited in our home regularly.

  • Kelley says:

    Palliating in the home or hospice in the home should be an expected way of dying just like midwives assists birth in both hospitals and home settings we need supports for the people who die to be cared for in their homes if that is their wish. If not then residential hospice should be readily accessible. Sadly this is far from the case in Ontario.

  • Marla says:

    I am in Nova Scotia my Mom came to live with us to die. She had metastasized breast cancer. We all wanted her to die in our home but due to the lack of supports available she died in hospital.
    The care aides were the worst rarely was it the same person. Most would spend significant amounts of time describing what the wouldnt or couldnt do, were not well enough trained to do what was actually needed. We could only get respite from 11am to 4 pm unreliably so getting to appointments was impossible. We also had 3 children to care for so with only two adults exhaustion hit us quite quickly. We would rotate nights. At the end when the care aides came I just excused myself and let my husband and Mom negotiate with them.
    We had problems with her oxygen machine ended up changing providers. Our health care is so compartmentalized it made it difficult who you called for what. Plus trying to navigate the insurance and government red tape was just a nightmare to get her oxygen at a comfortable level for her.
    We did meet some great professionals Doctors, Nurses etc but.. it all seemed highly inefficient and in the end unmanagable. So my Mom’s last months were in a hospital where she suffered from delerium being angry at my family for putting her there and not taking her back home. My mom’s delerium was always significantly more paranoid and dark in nature when in hospital.
    At times I would feel anxious leaving my Mom because hospitals and employees are trained to treat symptoms and diseases not actually care for people. It still required daily visits, groceries brought in, laundry, family meals and events planned in hospital. So the hospital relieved only a portion of the care and exhaustion.
    The hospital did what it could and they had a great Social Worker on staff. Ultimately I feel we did what was best given our resources. A part of my grief will always be that my Mom suffered emotionally because I did not have the supports to allow her to die at home.


Celina Carter


Celina Carter is a freelance writer, registered nurse, and PhD candidate at the Dalla Lana School of Public Health, University of Toronto.

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