Managing within the health care system
We asked the women we interviewed about their experiences within the health care system and many described feeling satisfied with the system or at least parts of it. They highlighted things they appreciated such as good organization of care, good collaboration amongst institutions, seamless transition from private to regular health care, and their gratefulness to receive care for free. Yet most women also encountered difficulties and problems within the health care system. In the following we present women’s experiences with managing their care, navigating the health system, problems they encountered, and their advice on improvement.
Managing their care
Managing their care and navigating the system was something most women had to learn. Women said things like: it’s making your own way and being your own advocate, do not back off, don’t be afraid, it is a lot of work or difficult and I just followed my instincts or guts. Shelley found that it is hard to manage your own care when you do not have all the information.
Having experienced several errors, Ginette is more defensive and feels nobody should be left alone in the emergency department.
Transcript
You know the care. As an example, in the operating room, it tells you the kind of atmosphere, doesn’t it? I was operated on four times, I am starting to know. Sometimes the way people are interacting could be pleasant, the way they are talking to each other. But some […]
Women describe the things they do to improve the management of their care, such as writing information down and organizing it in folders; some women selected their own doctors and Ginette thinks you should always have someone with you. Several women changed doctors or asked for a second opinion (see also the page Relating to health professionals).
Laurie thinks that people can be better informed about their own illness.
Transcript
I think most of the healthcare are good people—I mean obviously they’re into healthcare and they’re doing their job because they care about helping people, right and they’re doing their best in the current system to do that. But I think it’s time to rethink the system a little bit […]
After undergoing a painful intervention from a health care trainee Ginette asked if she could refuse receiving care from a trainee.
Transcript
Did I lose faith? I don’t know what to tell you because I am a little mixed up. Because they almost gave me an insulin shot although I am not diabetic, trusting is difficult. I am more on the defensive now. In general, I am very sincere when I say: […]
Some women also mentioned their use or desire to use marijuana, either for pain control or to improve the taste sensation. They felt that this treatment should be available more readily for patients, and although some clinicians are supportive, the systems for prescribing and delivery have not been established everywhere.
Navigating the system
In all, navigating the health care system was not easy for most, particularly when the women had to do so many things in such a short time. They described how things could be made easier, such as being able to speak to a navigation nurse or educating patients about their illness to manage their care. Women had different opinions about taking responsibility for managing their illness. Kathryn stated “this disease is my disease it’s not just the doctors’ disease and I’m going to do it my way”, where Christine on the other hand said “I’m so far removed from anatomy classes and chemistry classes and biology class I’ve no idea so you’re the professionals you need to figure out what is going on”.
Patricia feels that patients should be sharing responsibility with their providers for their care and decision-making.
Transcript
I’m on the Patient & Family Advisory Council at Cancer Care Ontario as well as for the Regional Cancer Centre here. In Canada we’re behind with patient-centred care. Somehow over the years we’ve given over our care entirely to healthcare providers and that’s not right, it shouldn’t happen entirely. Yes […]
To collect more information about her illness status Laurie requested an oncotype test even though she was not entitled to this test.
Transcript
So the normal course of events would be that then I’d go for 6 months of chemotherapy and because I had one node positive they wanted to also do radiation, both on the breast area and on the supraclavicular area here. But I didn’t like the sound of that either […]
Even though everyone had different approaches and comfort levels in dealing with their disease, coping with the ‘system’ was sometimes problematic. As Laurie said “my medical records are spewed all over those 9 locations and no one has all of it. I’m the only one who knows the whole story which is not good, super not good”. Other women also noted that either they or their GP were the only ones that had the full picture.
Continuity of care
When Laurie heard she had breast cancer her first worry was about having to deal with the medical establishment. Like Laurie, several other women spoke about having to undergo different kind of treatments in different places. Jeanette, for example, was moved from one location to another just after the wire for the biopsy was put into place and had to hold a cup on her breast to protect the wire. Ginette spoke about the financial and the physical impact when having to go to many different locations. Travel distance to receive care was a problem for several women. Radiation services for Jocelyn were a 2-hour drive away; some women had to stay in another town for treatment, see Radiation therapy.
Communication with healthcare teams as well as between institutions were highlighted as problems for some.
Having diabetes and breast cancer was a challenge for Christine and she felt that there was little communication amongst the professionals.
Transcript
Bless their hearts they’re so sweet, but I’m a Type 1 diabetic and one of the things that I discovered is that disciplines don’t talk to each other so I sat in the chemo session and I said well I’m a Type 1 diabetic, what am I supposed to do? […]
Shelley indicated that she had good communication with her health care professionals but that there was a lack of communication between them. Amanda feels that despite the electronic system she was still the “link” to make sure all the information was in the right place. Debbra cautions you to make sure the pharmacy knows what medications you are taking because they are not always connected to the cancer agency. Julia and Tina refused hormone therapy and their oncologist informed them that he could no longer follow up with them. Julie is currently seeing a naturopath and Tina is seeing her surgeon. Nadia (A) mentioned that she never called her doctor for follow-up and that she waited for him to contact her. Her daughter, who was present at the interview, noted the reluctance of people from another culture to contact the doctor for a follow-up.
Waiting times were an issue for many women. Some told us about waiting times before appointments and others about the long waits between diagnosis and first treatment. They found it particularly long when they did not yet have a support system in place. Many women felt that this was one of the most important things to improve within the health care system.
Private Practice Settings
Many women went into private practice, some to speed up treatment. However, some women ended up in private practice accidentally, such as Annie who thought her insurance covered private clinic services. Despite the additional costs, the women were happy to have access to timely care at the private clinics and felt that there was good collaboration between the clinic and the regular system.
When Isla's oncologist joined the private system she had to start paying to see him.
Transcript
Well Quebec is an interesting case study, what can I say? There is a lot of patient experiences now, you’ll find in Quebec where people have to pay out-of-pocket for some of their stuff because there are 250 doctors in Quebec that are outside of RAMQ (Régie de l’assurance maladie […]
Inappropriate process
Some women experienced inappropriate procedures or interactions with the system, which were emotionally difficult. Lorna received a call to schedule a screening appointment after her mastectomy and Amanda noted her frustration at having to recount her family history over and over again.
After her mastectomy Joanne was asked about her breast complaints during screening, Joanne responded with humour.
Transcript
That was funny, my first mammogram visit. I get they have to go through all those questions .Of course now I’m going all the time, every 6 months or I think it’s only once/year now. Anyway they have to go through all those questions in the beginning and the poor […]
Tips
Women suggested providing more support for health care professionals to spend more time with patients. A “breast cancer pathway” could help patients avoid problems, not falling between the cracks in the system (e.g., better advice about exercise and physiotherapy after lymphadenectomy). Some women mentioned training staff to take a whole person approach and pay more attention to patients’ emotional well-being, such as providing more wellness centers. Amanda mentioned that it is essential for her province to cover the costs associated with egg preservation. She also stressed the importance of having separate emergency services for people who are undergoing chemotherapy because they have a compromised immune system.
Review date: 2019-09