By Dr Miriam Mutebi, Consultant Breast Surgical Oncologist at Aga Khan University Hospital, Nairobi
We now have a new theme for World Cancer day for the next three years “United in our goals, unique in our needs”. But what does this mean for patients, caregivers and clinicians?
This stems from the fact that everybody’s journey is unique, and it’s really about understanding the intricacies of that unique journey and supporting them throughout their care. As much as patients may share common medications and common treatment approaches, they still need to be contextualized differently through the individual patient’s lens. The new theme tries to bring the unique face of cancer for each patient undergoing therapy. In line with this theme, we have had many developments coming up as I have pointed out in the below questions.
How has the management of cancer patients evolved over time when it comes to this theme?
The management of patients has evolved over time based on our greater understanding of tumor biology and disease processes. I would also say that as a medical community, we have grown and evolved quite a bit. We have moved away from the paternalistic approach to medicine, where figuratively ‘come down from the mountain’, and give decrees, such a many tablets to take etc. We are now leaning more towards shared decision making, where there is an opportunity to have a discussion with patients around what their treatments options are, to discuss the benefits and risks of treatment and to arrive at a common and agreed on treatment strategy.
What kind of issues do most patients present with and how important is it to consider their interests in managing them?
Everybody’s journey is unique, but some of the most common concerns patients have in our setting are really around financials and the costs of treatment which are often out of pocket resulting in financial toxicity. This is a cause of considerable stress for most patients. We also tend to have younger patients diagnosed in our setting, so future fertility and sexuality concerns, especially for reproductive cancers, are a stressor for many patients. This is because this can be affected by different treatments and it is important to put these in mind when outlining a treatment plan. It is equally important to have candid discussions around some of the effects of therapies on these aspects.
African cancer patients also have to deal with a great number of social cultural concerns. Cancer fatalism; the belief that cancer is always fatal and stigma still persists around many cancers. Patients are constantly dealing with, how will I be perceived in my community and how will I navigate my cultural moors? This is in the setting where explicit discrimination still exists and many patients lose their jobs and livelihoods just because of a cancer diagnosis.
Does considering a patient’s/caregivers interests pose a challenge/dilemma to clinicians, please highlight some of these challenges?
As a community, we have matured. Considering a patient’s or caregiver’s interests does not necessarily pose a challenge or dilemma to clinicians. I think it’s actually integral that clinicians have these in mind when we’re thinking of a treatment plan because sometimes unless we’re able to put ourselves in the patient’s shoes, then we’re not actually able to fully treat the patients because you need to have a sense of what is the understanding of disease for the patient, what are some of the issues that they might encounter, what is their interpretation and understanding of that in order for them to start and continue with their care.
Many patients unfortunately are diagnosed with advanced disease and often do not complete their care. Unless we start to address some of these concerns as to why this happens, then we might not necessarily have patients completing their treatment journeys.
How do you navigate these dilemmas without compromising the quality of patient care?
It is about the approach we use of shared decision making. At the end of the day, irrespective of whatever condition they have, patients just want to be heard. Taking into account some of these considerations and using them in the sort of broader decision making or coming up with a treatment plan goes a long way towards ensuring that patients feel not just seen, but heard, and also that their wishes are respected, as long as it doesn’t compromise their care.
Sometimes young breast cancer survivors on follow-up hormonal treatment may choose not to disclose this when they get into new relationships. What is your take on this?
It is difficult to generalize this response as it needs to be largely contextual. Disclosure is very subjective, and indeed, in other parts of the world there are actually legislatures around the ‘rights to be forgotten’, which basically means that the rights of cancer survivors to resume a normal lifestyle without encountering financial discrimination based on their past cancer diagnosis is preserved, after they have been declared cured of the cancer. Having had a cancer diagnosis shouldn’t necessarily define you and you shouldn’t carry that with you after surviving it.
Part of the reason why it’s difficult to navigate in our setting is because discrimination, based on a cancer diagnosis is still prevalent. Patients still report getting terminated just because of a cancer diagnosis or not being promoted. This really speaks to the need to strengthen the framework needed to support patients through their journey. Of course in one to one personal relationships, it really depends on the context and setting of any disclosure. I think it’s really about safe disclosure to trusted individuals and then sort of thinking about what the implications of that disclosure would be. And so I think it would pretty much need to be on a case to case basis and not a one size fits all approach.
Mental health is critical when it comes to cancer care, yet most facilities may not factor this in their services, how can this be propagated in cancer care?
Mental health is one of the areas where we struggle as clinicians to get patients the support they need. There is still a lot of stigma around mental health. Sometimes when we advise patients that counseling is an important part of their cancer journey, quite a number of them get hesitant because of the stigma associated with it.
Part of the additional concerns have also been around the cost because counseling and psychosocial or psychological support is not just the one off service. Overtime, especially over COVID, there has been some democratization in terms of access to these services, but they still remain economically out of reach for quite a number of patients.
In fact, a number of patients who we recommend these services to, look at the costs and say, daktari si nipoone kwanza?, which literally means ‘can I heal first and then get the (other) treatments’? As clinicians, we try to emphasize that mental and physical healing go hand in hand, as we try from the back end to help improve access to these wellness services.
So I think there’s really an opportunity to one, normalize conversations around mental health and mental concerns. But two, to think about how we ‘mainstream’ these services into regular care as part of the standard of care for anyone with long standing health concerns and conditions like cancers. Any long standing chronic health concern is to have a psychological impact and really changes the quality of life for patients. It is important to recognize this and start to address the long term implications which could include anxiety, depression among others. How we develop sustainable models that work in our setting whether it is through peer support, patient and caregiver education and support etc. are some of the areas that we as a cancer care delivery team are trying to develop.