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.”
·
“Fatigue.”
·
“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.”
·
“We are
a lot closer and tell each other "I love you" on a daily basis.”
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.”
·
“Even
when you have a job and benefits, you still take a big hit financially,
especially if you are the only wage earner. A lot of us have difficulties
making ends meet while working, and when your salary is cut even further, it’s
a major juggling act. Also, after cancer
the cost of medications are very expensive. If there are changes made in your
life that affects your medical plan, you are basically screwed and have to pay
for your medications. Again, another juggling act. Do I take the medication and
let other things slide, or take the chance that I will get cancer again if I
don't take the medication? In the end you still end up with financial
difficulties.”
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.
Thank you.
[i] http://www.cancer.ca/en/get-involved/take-action/what-we-are-doing/financial-hardship-of-cancer-in-canada-mb/?region=mb
