Dr. Gillis-Doyle is a palliative care physician in Fredericton and assistant professor at Dalhousie University. We spoke to her about the need for more personal support workers for palliative care patients who are staying at home in New Brunswick.
Dr. Gillis-Doyle: They play a very important role. I had a home visit this afternoon with a patient who is looking to stay in her own home. Her family can’t support her full-time, and while she has extramural support, it’s only for two hours a day.
She really needs someone to be able to check on her, to check that she’s not mixing up medications. She needs someone to prepare some light meals for her and those types of things. Unless she pays privately to do that, she’s not going to be able to stay in her home much longer.
The reality is, with support, she could probably be in her home for a number of months. But without that support, it will probably be only a few more weeks before we’ll need to bring her into hospital or into hospice, which isn’t what she wants, and it costs the system much more. With families being as busy as they are right now, palliative patients really need that basic care and support to be able to stay in their homes when they have a serious illness.
Dr. Gillis-Doyle: There’s certainly a level of compassion needed, and more weekend, evening, and overnight support.
Personal support workers supporting palliative patients should recognize when to ask for support from nursing staff or extramural staff. These patients tend to be much sicker and have more of a symptom burden, and therefore personal support workers may be the people that are with those patients when the patient is in significant distress, and they need to make sure they have the tools and be able to contact the appropriate nursing or physician support to get the patient what they need.
Dr. Gillis-Doyle: Currently, there are about 4,500 personal support workers in New Brunswick. The industry has told us that they are losing more people annually than they are able to recruit. Some of the challenges include wages, working conditions such as a lack of guaranteed hours, and working in isolation.
Finding personal support workers that are available, especially in the evenings and on weekends, is very challenging. Finding personal support workers in rural areas is challenging as well. This is a reason why many palliative patients can’t stay home — they don’t have that support.
Dr. Gillis-Doyle: Private colleges and community colleges have programs available, and the government has offered some training that didn’t include certification. From what I understand, however, palliative care is not part of the standardized training curriculum that is approved by the province. The programs that exist would be more directed toward personal care of someone who is rehabbing an injury or needs some extra support following the diagnosis of dementia or something like that.
The needs of a palliative care patient might be more specific around needing support with symptom management, and that part isn’t there in the curriculum in the training that I’m aware of.
Another challenge is a lack of people — the industry has also said that private and community colleges are struggling to fill training programs, so that poses a problem as well.
Dr. Gillis-Doyle: They are the lowest paid in the country. In addition, they aren’t paid for their mileage, and they sometimes travel for an hour or more to see some of their clients. They also aren’t paid for their sick time.
This presents another challenge if we want to recruit and retain personal support workers, who are only going to become more important as our population ages.
Dr. Gillis-Doyle: There is a perception that once people are considered palliative, they will be eligible for 24-hour care at home, and that simply doesn’t exist in this province. It does exist in other provinces, and I think it’s unfortunate that we aren’t able to support these patients during their most vulnerable time in their lives.
We should be able to offer them some basic level care — meals and toileting, the basic necessities of life. Instead, we end up bringing them into a facility of some sort where it’s costing the system much more money and not providing the quality of care consistent with what the patients wishes are.
I hope that through the work of our working group, we can move toward improving palliative care in our province.