What do cancer patients want?
By Jackie Manthorne
Presented at the Economic Club of Canada
April 14, 2014
Thank you very much for your kind introduction. And I would also like to thank all of you for attending today! I was hoping that Toronto wouldn’t be having a blizzard and that we all wouldn’t be sporting boots, parkas and tuques! Last week I was in Gatineau, where there was sleet, Vancouver and Victoria, where it was warm and the cherry blossoms were blooming and the trees were green, on to Edmonton, where it was warm but damp, and finally to Calgary, where the wet snow was temporary, so my sense is that right across the country, spring is finally emerging from our long, cold winter!
What do cancer patients want? Those of us working and volunteering at the Canadian Cancer Survivor Network strongly believe in the mantra “Nothing about us without us;” after all, patients, survivors and caregivers are the experts: they are living the cancer journey. So the first step in finding out what patients want is to ask them and then listen closely to their responses so we can work with them to find solutions to issues they identify as important to them. More often than not, these issues pinpoint gaps in our healthcare and cancer care systems.
Last year the Canadian Cancer Survivor Network conducted a members’ survey in which we asked what patients want, and much of what I am going to talk about today is what they responded and the conclusions we can draw from these responses.
Overall, patients told us that they were concerned about:
· The physical side effects of treatment and surgery and psychosocial or mental health issues.
· Changing family dynamics.
· Financial issues and difficulties transitioning back to work.
· Fear of cancer spreading or coming back.
The physical and mental side effects of treatment are wide-ranging and are the primary concern of cancer patients and survivors. Survey respondents reported many physical side effects from their treatment and surgery. These include lymphedema, facial and intestinal reconstruction, neuropathy, and other debilitating physical issues. Pain resulting from nerve damage, scar tissue, and surgery is a continuing issue for many patients and survivors.
Patients told us:
· “I had a significant defect on my face from reconstruction, so dealing with seeing it every day was tough.”
· “Chemobrain. I mean, memory issues, difficulty sequencing. Not being able to keep up with others.”
· “Impotence and incontinence after prostate cancer treatment.”
· “Radiation caused rib pain for two years.”
· “I developed neuropathy which I would like to go away.”
· “I had bladder cancer, and incontinence is an issue I have had to face; although I understood that this can happen after treatment and surgery, it is hard to face day after day.”
Mental or psychological side effects patients told us about include:
· “I struggle with body image issues after my mastectomy.”
· “Fear of dying before my children grow up.”
· “It is generally thought that once you have completed treatment and a certain time has passed, you are now ‘cured.’ There is little understanding of the fear and anxiety that every survivor feels that it could return.”
· “Fear, stress and isolation.”
· “I became the problem; I am no longer seen as a problem solver by my children.”
· “It’s a strange world when you’re 30 and anyone else you’ve known that’s had cancer is dead.”
Some patients reported seeking help, but many reported working through these and other psychological issues on their own, with family and friends, or in cancer support groups.
Lymphedema, or swelling in the arms or legs, is a serious and frequent concern among cancer patients and survivors. It can occur right away, or years after treatment ends. Aside from the physical problems it creates, it is also a barrier to returning to work and the cause of additional costs, since government coverage of sleeves is uneven across the country, and patients without a health care plan must pay for physiotherapy, and those with plans often max them out before year end.
One patient who responded to our survey said, “The health care system should be paying for my lymphatic drainage massage. It is very costly, approximately $90 an hour, and now I’m on CPP disability and simply can’t afford it. Yet, I need it! There is no financial support for treatment of lymphedema and this is so unacceptable.”
An Ottawa friend who subsequently died from metastatic breast cancer had such severe lymphedema in her left arm that it would pull her off a chair if she casually bent to pick up something on the floor without thinking about it and planning her movements first. Another patient in Montreal suffering from cancer of unknown primary developed lymphedema in both legs and was no longer able to go to her office to work; luckily, she was able to work from home, although she was in constant pain, and her income was reduced.
How can we help patients deal with the physical side effects of treatment and surgery and psychosocial or mental health issues?
CCSN has been speaking to politicians and other decision-makers about establishing rehabilitation services for all cancer patients and survivors suffering from lymphedema and other ongoing side effects, no matter when they occur in each patient or survivor’s cancer journey. Heart attack and stroke patients and those receiving joint replacements receive rehabilitation to help them recover, get back to work, and go on with their lives. While some patients in our survey reported receiving some rehabilitation services post-treatment, most did not. Without similar services for cancer patients, ongoing side effects from surgery and treatment may continue to impede total recovery.
Most patients reported a sense of abandonment once their cancer treatment ended:
· “I am having to deal with the loss of the people and trust that was there while everything was being done from the very beginning and to the last day of radiation.”
· “The ‘safety net’ was gone once I stopped all the visits to the specialists.”
· “Once treatment was finished, I was on my own, working with my family doctor. If I had any issues regarding the cancer or problems from treatment, I would always ask myself, how much does a family physician know about cancer? I was always thinking that hopefully, he knows what he is talking about!”
This strong feeling of abandonment among cancer patients is so widespread that the Canadian Cancer Survivor Network has been discussing the feasibility of continuing cancer patient navigation post-treatment with provincial politicians and other decisions makers. This would enable patients, survivors and caregivers to access information, services and help from cancer experts whenever they need it. Ongoing cancer navigation should also help prevent the late diagnosis of recurrences and metastasises and result in a better quality of life for survivors who still suffer from treatment side effects.
Another important issue that patients have identified is changes in family dynamics.
Our survey is not the first to bring to light the physical ramifications of cancer treatment on sexual function and intimacy, which may cause additional mental health issues. Body image issues are cited, as are emotional distance and in some cases separation from spouses or partners. Respondents cited loss of intimacy and the ability to fulfill a partner’s needs as a frequent side effect of treatment:
· “I have trouble feeling close to my spouse at times, and I feel no sexual desire.”
· “My husband became physically distant. He was very helpful and always supportive but we never made love after the chemo. Now, nine years later, it is okay.”Several patients reported that their relationships ended as a result of their cancer. Partners were reportedly unable to deal with the challenges and left because of the loss of intimacy, or cheated on the cancer patient or survivor. These occurrences were linked to a sense of isolation and depression. Relationships with children, parents and other family members sometimes changed as well.
· “One child wanted to help me, but he was physically affected by stomach pain and worried a lot. The other child could not cope to see me so ill and went to live with his father for a while. My partner seemed supportive; however, he went off to have an affair with someone who was very well endowed. We are no longer together.”
· “I was a single mom wishing to spend more time with my adult child. She was afraid she may contract cancer and shunned me. She had difficulty being around me and seeing me vulnerable.”
· “Three days after diagnosis, my boyfriend left as he ‘couldn’t handle it.’ I found people didn’t know what to say to you or they expected you to be back to ‘normal’ when you are feeling anything but normal. And when I was concerned about a recurrence, my mother unintentionally said some damaging words that put a strain on our relationship for a while. She just didn’t know what to say, and told me ‘well, at least you’ve lived a good life.’ I was 36!”However, the effects of cancer on patients’ relationships with the partner and family can also bring people closer together. Many patients also reported that their relationships had improved post-diagnosis, with families being drawn closer together and priorities made clear. Some patients who had suffered a broken relationship reported that their new relationships were stronger than their previous, broken relationships.
· “I think my family is valuing me more.”
· “My husband and I have always been close, but we are even closer now, realizing that life is short. Little things no longer bother us.”
· “We are more open and honest about everything: health, emotions, love and well-being. It has created a close bond between me and my entire family.”
· “Got divorced. But got a new partner. Life improved greatly.”
Again, access to continuing cancer patient navigation services would enable patients, survivors, caregivers and family members to deal with not only the ongoing physical side effects of cancer surgery and treatment, but also the psychological issues and adjustment to changed family dynamics and the “new normal” patients and their families experience.An additional concern expressed in our survey of members relates to financial issues and difficulties transitioning back to work.
The Canadian Cancer Society, Manitoba Division and the Canadian Cancer Action Network’s study entitled Five-Year Action Plan to Address the Financial Hardship of Cancer in Canada: A Call for Action was the most recent of several studies of financial issues experienced by cancer patients.[i]
Study findings included the following:
“Nine out of ten Canadian families touched by cancer reported some form of financial challenge as incomes declined and household costs rose. For some, a cancer diagnosis started a financial tailspin that pushed ordinary people over the edge, resulting in debt, distress, bankruptcy and even a lifetime on social assistance.
“What emerged in this study was a consistent picture of financial hardship caused not by a single challenge but rather a combination of factors that created a perfect storm as sick leave and vacation time was used up and costs increased because of day-to-day living costs and unforeseen expenses from drugs and medical equipment to child care and travel increased. Surprisingly, parking costs at treatment facilities were more than a minor irritant, they were a major expense.
The report went on to say that, “These issues are compounded by a third factor: A lack of awareness and a false sense of security have left Canadians unprepared to deal with these challenges, both as individuals and as a society. Most Canadians do not know that a cancer diagnosis has caused some people to declare bankruptcy, lose their homes, lose all of their savings, make less than optimal treatment decisions or become dependent on taxpayer-funded programs for the rest of their lives. Until cancer comes into their own lives, they believe the myth that all health care is free. Most never imagined that they could face such difficult challenges at such a vulnerable time of their lives. The reality comes as a shock to many.”
This shock and frustration was voiced by many patients who responded to our survey:
· “I had complications and multiple surgeries, which had me off work for three years. I was single, self-employed and had previous employment doing physical work as a home support worker. I had no money coming in and had to spend my savings to live for three years.”
· “I received a very small amount of medical financial assistance from the government. I needed to have it supplemented by asking friends and family for assistance, as what the government paid wouldn’t even pay my rent. The government then said I could not receive ‘any’ funds if I was receiving assistance privately.”
A recent Léger survey fielded by the Canadian Cancer Survivor Network also shed new light on the striking financial, decision-making and emotional burden the disease puts on cancer patients and their caregivers. 301 cancer patients and 201 caregivers participated in this survey, making it one of the largest caregiver surveys that we are aware of and providing new and important information on the role of caregivers in their loved ones’ cancer journeys. In fact, caregivers reported more difficulties in accessing treatment and necessary medications, difficulty finding flexible work options and loss of salaries than patients, which clearly points to caregivers’ role as cancer care navigators and managers. While one in five patients experienced difficulty in finding flexible work options while battling cancer, nearly one half of caregivers struggled to integrate care for loved ones into their work schedules, making the management of the disease and their income very challenging.As such, the Canadian Cancer Survivor Network strongly recommends that caregivers, who reported receiving no significant outside help other than from friends and families, should not be left to fend for themselves. Caregivers should join patients in the centre of the circle as we move toward defining and implementing patient-centered care.
And to add insult to injury, Employment Insurance Sickness Benefits last only 15 weeks, certainly not long enough for someone going through cancer treatment, and Canadian Pension Plan Disability Benefits are extremely difficult to access. CCSN will continue to raise awareness among decision makers of this gap in our social support system and to push for change so that cancer patients are not cut off EI Sickness Benefits in the middle of treatment, and often forced to return to work before they are ready.
Return to work was often a struggle:
· “I made the transition back to work, but it was an effort. My employer tried to reduce my hours from a full-time to part-time job.”
· “I had a very slow recovery due to high doses of chemo. I was let go from my job as I could not return to work full time in six weeks.”
· “The resulting lymphedema in my left leg due to tumour removal has limited the time I can spend standing. I can now work as a teacher only part-time instead of full- time.”
· “When I went back to work, my manager promoted a junior above me in case I got sick again. I left that place of employment but never found another place I enjoyed as much.”
Financial issues identified by patients also include lack of timely access to drugs and medications as well as the cost of drugs already alluded to above.
When you are diagnosed with cancer, you want timely access to the best medicines to stop your cancer in its tracks, to prevent it from recurring, and to stop it from spreading. If it has spread, you want immediate access to the best medicines to stop it from progressing and to maintain pain-free quality of life.
But depending on where you live in this country, you may not have timely access to the best medicines, and even if you do, you may not be able to afford them!
The Léger survey revealed worrisome gaps in access to drugs: one in six patients and nearly one-third of caregivers reported difficulty in accessing current or effective treatment options and reimbursement of drug costs. And over one in 20 patients and one in five caregivers experienced difficulty in accessing medicine, When you translate this into the number of Canadians who are likely to develop cancer in their lifetime – two in five, according to the Canadian Cancer Society, we are talking about thousands of people who have difficulty accessing cancer meds every year.
One patient who responded to our survey of members said this: “Make all cancer drugs available. Some are not available even though they have been shown to be beneficial. Also new drugs are often not funded and are slow to enter the system. These drugs are too expensive for most people to afford. The alternative is to die. Think of that if you can.”
Why is this so?
One reason is the long and winding road of drug approval in Canada, starting with Health Canada and proceeding through either the pan-Canadian Oncology Drug Review or the Common Drug Review and continuing through each province and territory, with the addition of the Council of the Federation’s Pan-Canadian Pricing Alliance. Creating solutions to the long delays in drug approval is beyond the scope of this talk, but there is certainly an unacceptable delay in accessing new medicines, often years. It is unclear what consequences these long wait times for access to new drugs have on patients. Are some patients not receiving the gold standard of treatment compared to patients in other countries? Certainly there are no safe wait times for patients living with metastatic cancer.
A second reason for access difficulties experienced by patients is the fact that healthcare is a provincial/territorial responsibility, and public coverage of any given cancer drug (or any prescription drug, for that matter), varies from province to province – a postal code lottery of drug access. What is available in one province may not be in another, despite the fact that the drug in question has been approved for use in Canada. Or, it may be available under the formulary in one province but not in another.
Making cancer medications available and affordable to all Canadians is not only fair, it also makes economic sense. I might add that we are working on this issue in coalition with our over 40 partner groups as well as stakeholders in other chronic disease organizations.
Overall, survivors face difficulty with the loss of healthcare interactions, returning to work, and affording treatment costs.
· Regardless of their experience with treatment, the sentiment of abandonment by the healthcare system or lack of post-treatment care was widespread. The most common example given was lack of access to healthcare professionals post-treatment.
· Many patients, survivors and caregivers expressed a desire for additional support in paying for drugs and other treatment-related items (i.e. lymphatic drainage massage, PSA testing, needles). There was a sense of annoyance at the lack of or insufficient funding for survivors.
· Barriers to returning to work were primarily physical – fatigue, lymphedema, or other side effects of surgery or treatment. Some survivors also said that they were forced to leave their jobs due to cancer-related fatigue or complications.
· Depression, anxiety, isolation and other mental issues were also identified as barriers to maintaining to a normal life, work, and functional relationships and family life.
· Some patients had positive experiences returning to work or working through their treatment, but companies were identified as making efforts to ensure that the survivor was able to come back to work.
I have made suggestions about how some of these issues can be better dealt with by our healthcare and cancer care system, including making ongoing, lifelong cancer navigation available post-treatment to patients, caregivers and families and re-visioning recovery from cancer and the side effects of surgery and treatment as a rehabilitative issue.
The Canadian Cancer Survivor Network works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.
We invite you to join us in this work.