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Practical Insights for Busy Caregivers

When planning for a death at home, be prepared to ask tough questions


April 24, 2017, by Pat Morden, Caregiver Exchange

You can hear the frustration in the voice of Dr. Samantha Winemaker, a community-based palliative care physician in the Hamilton area.

“The most important ingredient in a successful death at home is information,” she says. “Caregivers need to understand the illness and know what to expect in the months ahead. That’s a crucial conversation that is absolutely missing with many of the patients and families I meet.”

Winemaker says doctors and nurses are often reluctant to talk about the dying process, feeling that they are adding to the burden on patients and caregivers. Caregivers, in turn, wait for providers to start the conversation and if they don’t, go home more worried than ever.

It’s up to caregivers to ask the tough questions, she says – not just ‘what is the prognosis?’ but also ‘what exactly will happen over the next six months?’ “It’s hard to prepare if you don’t know what you’re preparing for,” says Winemaker.  “Caregivers often have to trigger the conversation.”

For example, they should know what functional changes to expect in the person they’re caring for. The person will be more tired, eat less, sleep more, withdraw a bit, and need more help with personal care. Knowing that this will happen, caregivers will be less likely to panic and take the person to the hospital.

They also need to understand that acute episodes may occur during the dying process. For example, a person with lung disease who has been hospitalized several times for breathing difficulties may well have another such incident. The key, says Winemaker, is learning how to recognize early signs, taking preventive steps, and having an action plan ready if a crisis does happen. It’s critical to know who to call, at any time of the day or night.

Caregivers must also be open and frank about how they themselves are doing and what support they need. If home is no longer a good option, they should know what other options are available and let go of feelings of guilt or failure.

When a death at home happens as it should, there are no surprises, Winemaker says. The caregiver has an opportunity to say goodbye and grieve, and the person being cared for slips away comfortably. “If that happens, I have to assume that the caregiver can return to normal life more quickly and in better health.”

For more information, check out this resource from the Canadian Virtual Hospice. 

For local services that support dying at home, put your locality into, then click on “In-home Hospice Care.”

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I struggled with the phrase used by Dr. Winemaker “The most important ingredient in a successful death at home is information..." I don't think of death, no matter where it takes place, as "successful." Also, there was no "quick return to a normal life, nor in better health ..." In fact, I struggled with grief -- much like anyone who has lost a loved one would expect to do. (I also got terribly ill with an upper respiratory infection that knocked me off my feet, immediately following my grandmother's death.) In my experience as a care giver for my grandmother, who succumbed to pancreatic cancer, the hospice workers who came to my home, provided more information on the dying process than I wanted to have. Maybe I'm different that way? I certainly didn't have my head in the sand ... I knew she was dying ... I knew she'd sleep more, not eat, not drink, not converse much with me or anyone ... It was a tragically sad time. I had to try to prepare myself psychologically, emotionally, mentally for what was about to happen, and learning the specifics about the death process did not help me at all! For instance, being told that the audible rattling coming from my grandmother's chest, was known as the "death rattle." How could that possibly make me feel better? It didn't! It actually made me feel worse. I was also given pamphlets and a guidebook for the dying process. I didn't care to have those things, either. I think a much better approach is to ASK the care giver if they have questions on what to expect. ASK them how much information they would like to have regarding the "clinical" aspects of the dying process. Caring for a loved one who is dying is emotionally, mentally, and physically overwhelming. Respecting each individual (care givers') unique need for information is the best approach, in my experienced opinion.
Thank you very much for this important point you make. Every patient and caregiver is different with respect to his or her need for health information. Some will want it all, in great detail. Others will want very little. How much information people want and need is individualized and needs to be respected. It is important to check in with patients and caregivers at intervals throughout their journey, inviting them to know more as time passes.