Joanne MacPhail was diagnosed with breast cancer in 1993 at the age of forty three. At that time, her treatment included two surgeries, as well as a lengthy course of chemotherapy that had profound physical and emotional side effects. MacPhail details how she sought out reflexology, therapeutic touch and massage therapies to help her cope with side effects and the ongoing anxieties related to her cancer.
“You live with it every day… the fear can consume you that when something doesn’t feel quite right, the cancer has come back” she says.
And indeed MacPhail’s cancer did come back in 2008 when she discovered a tumour under one arm. When she saw her oncologist and was put on an estrogen limiting drug, her oncologist showed her a list of herbal and other medications, such as Black Cohosh, which she should not be taking because of potential interactions. In fact, she was taking this herbal medicine at the time and stopped immediately.
“I was really impressed by that [their knowledge of interactions]” she says, adding that her oncologist was supportive of her using non-conventional therapies to help her better cope, and they had many open discussions. Her providers, she says “were open, and there was a lot of information sharing.”
MacPhail’s experiences are echoed by many cancer patients. Surveys and research evidence have shown that nearly half of cancer patients in countries with modern medical systems seek out therapies that are outside of the conventional medical system’s standard of care. Alongside their patients, conventional cancer providers have become more open to these therapies.
The same is true in Canada. What are some of the reasons motivating Canadian cancer patients to seek these therapies, and how is conventional cancer care responding?
A move away from the language of ‘Complementary and Alternative Medicine’ towards Integrative Care
Therapies ranging from acupuncture to naturopathic medicine to homeopathy are often described as Complementary and Alternative medicine. Some experts in this field have criticized this term, saying “the words ‘complementary’ and ‘alternative’ have different meanings and should not be connected by ‘and’.”
The use of these therapies or treatments as an alternative to conventional cancer treatments is widely discouraged by both conventional and non-conventional health care providers. Patients who first try alternative therapies will often delay starting evidence-based conventional treatments. Research has shown that this can dramatically worsen patient outcomes – seen in a higher risk of death, and cancer recurrence for these patients.
Apple founder Steve Jobs, for example, was reported to have delayed conventional cancer therapies and initially experimented with non-conventional therapies when first diagnosed with pancreatic cancer.
On the other hand, for cancer in particular, there has been a growing phenomenon known as ‘integrative medicine’ or integrative care where patients are using non-conventional treatments or therapies alongside their conventional course of care which are seen as supportive to the therapeutic process whether or not they have direct biological effects on cancer.
Many cancer centres in the United States have embraced this by opening centres for integrative medicine within hospitals where patients can have a direct referral from their oncologist to providers with expertise in non-conventional cancer therapies like acupuncture, massage, mind/body therapies, music therapy and nutritional counselling.
Research has shown that some of these therapies can play an important therapeutic and supportive role for cancer patients. Outcomes associated with integrative care therapies described above include reduced anxiety and stress, and improved sleep and overall quality of life for patients undergoing conventional cancer treatments.
The American models of integrative care, however, have not been replicated in Canadian cancer centres. Wylam Faught, oncologist and medical director of The Ottawa Hospital Cancer Program notes that “there is a different business model in the United States” which has motivated the development of these integrative care programs.
Patients are paying for treatment out of pocket, or through insurers, and there is much more competition and choice among health care providers. One approach to attracting patients has been offering integrative cancer care within the walls of conventional cancer centres in the United States.
Canadian patients and integrative cancer care
While conventional, publicly funded cancer centres in Canada have not embraced integrative care, Canadian cancer patients have.
A study of Ontario breast cancer survivors found that over 40% had visited a practitioner like a chiropractor or naturopath and just over 60% used a product like vitamins/minerals or herbal medicines.
Similarly, a study of colorectal cancer patients in Alberta found that about half had used a non-conventional cancer therapy. About 65% of these patients had used psychological or spiritual therapies like mind/body therapies, 46% used vitamins and minerals and 42% used herbs.
An issue highlighted in these studies is that often cancer patients do not inform their oncologists or conventional health care providers that they are using these therapies. There are many reasons why patients don’t share this information with their doctors. Some are worried their doctors will react negatively or dismiss their questions, while others believe that because these are ‘natural’ therapies, they are safe. Studies suggest that patients will disclose their use of non-conventional treatment or therapies when directly asked about this. However, this does not always occur. In fact, guidelines to help conventional cancer providers discuss and question patients on complementary and alternative medicine use were published for the first time in 2010.
This is a very important conversation that patients need to have with their doctors. Some herbal remedies, vitamins and minerals have been found to have problematic interactions with conventional cancer treatments, like chemotherapy and radiation. For example, studies have shown that a common naturopathic treatment of high-dose intravenous Vitamin C can be harmful in cancer patients with certain risk factors.
Oncologists are “supportive of whole person care” says Wylam Faught. Though he adds that “when our patients take medications, we want to see these supported by trials, and make sure that these therapies do not take away from the efficacy of conventional cancer therapy.”
Who pays for & provides non-conventional cancer care in Canada?
A survey of Canadian family doctors echoed many of the same sentiments shared by oncologists about non-conventional therapies and treatments. Family doctors had positive attitudes towards therapies like acupuncture, massage therapy, relaxation therapy and spiritual or religious healing, which are perceived as low risk and potentially helpful.
Analysis accompanying the survey data notes that these treatments were for aspects of illness seen “to be chronic or psychosomatic … which often confound biomedical approaches.” However, family doctors were less accepting of homeopathy and naturopathy.
Stephen Sagar, an oncologist at the Juravinski Cancer Center in Hamilton and past president of the Society for Integrative Oncology says that Canadian patients seeking out non-conventional cancer care first go to naturopaths. He says that because naturopaths are regulated by several Canadians provinces (Ontario, Alberta, Saskatchewan and British Columbia) they have “more power in Canada than elsewhere and we have a parallel private system of naturopathy.”
The majority of Canadian patients seeking non-conventional cancer care are paying for these services out of pocket.
One exception to this is InspireHealth, a group of integrative cancer practices in British Columbia where some services, such as a consultation about diet and exercise a physician or nurse practitioner, are publicly-funded by the BC government. Other InspireHealth services are paid for out of pocket. This funding decision was criticized by some voices in the BC medical community as not supporting evidence-based care.
Meeting patient demands for integrative care
In spite of the out of pocket costs associated with these therapies, patients are demanding them. For example, in 2010 the Ottawa Hospital undertook an extensive process to engage patients in how they could improve the patient experience and design a more patient and family-centred approach to care.
A report documenting the engagement process and its outcomes notes that patients believed ‘holistic’ ought to be a core value of the cancer program. Holistic was described as “the complete needs of the patients and their loved ones are met: mind, body and spirit.”
Paula Doering, Vice President of cancer services at the Ottawa Hospital says that when the hospital asked its community where it could improve – one area that consistently came up was non-conventional therapies. “Our patients are seeking out these therapies … if they can manage their symptoms then all the more power to them” she says.
This openness towards integrative care has been reflected in ties being built with the recently-opened Ottawa Integrative Cancer Centre (OICC). OICC services include supportive services such as mind/body therapies and nutrition counseling, which one would see in an American integrative cancer care. However, the OICC website notes that “alongside a whole-person approach to care, we also offer highly selected aggressive natural therapies for their potential benefit and low toxicity profile” including a number of intravenous therapies.
While there is no formal relationship or partnership between the OICC and the Ottawa Hospital, some staff from the two organizations have been working together on research and education.
Shail Verma, an oncologist at the Ottawa Hospital sits on the Scientific Advisory Board of the OICC. “I am open to collaboration” Verma says, highlighting his belief that research efforts on integrative cancer therapies should try to “produce high quality evidence through well controlled trials to generate some objective, truthful and believable evidence.” Verma’s perspective is in line with a broader culture of evidence-based care for cancer patients in Canada. For example, Cancer Care Ontario’s Program in Evidence-Based Care is internationally-recognized for evidence-based guideline development.
Verma says that improved collaboration and communication between patients who are choosing to seek out these therapies and their providers within the conventional system will lead to “a safer approach for patients.”
Similarly, Dugald Seely, a naturopathic doctor and OICC founder has been invited to speak to oncology staff and students at the Ottawa Hospital. Seely says these opportunities to engage conventional cancer providers can help “change perceptions that there is no evidence for the therapies we offer and speak about the evidence base to create more understanding and openness.”
While such relationships foster increased understanding, Seely does acknowledge that since patients pay for their care at OICC out of pocket, there is a stronger incentive to spend more time with each patient. “We have the time to focus on the whole person, coach and support them and the Canadian reality is that the treatments we offer are not publicly funded ” Seely says.
While oncologists and conventional cancer care providers are increasingly open to integrative care, the practicalities of taking on these therapies and treatments within the conventional cancer system remain an open question. If integrative cancer care and providers grow in popularity, who should pay for these services and what outcomes would be needed to justify this, would join broader debates around access to supportive and survivorship services for cancer patients.
Wylam Faught says “a lot of the support offered by integrative care is through whole person care and mindfulness-type therapies, which are paid for out of pocket, and would be difficult for a public system to take on given the fiscal realities.”