Dr Miriam speaking poses fpr a photo
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 elicits 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.
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Cancer Patients Care Revolution
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.
Patients Stress and Trauma
Everybody’s journey is unique, In our setting, some of the most common concerns among patients revolve around financial challenges, particularly the high cost of treatment, which is often paid out of pocket, leading to financial toxicity . This is a cause of considerable stress for most patients. We also tend to have younger patients diagnosed, 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.
Challenges On Patients And Caregivers
As a community, we have grown in our understanding and approach to patient care. Considering a patient’s or caregiver’s interests is not a challenge or dilemma for clinicians it is an essential part of treatment planning. To provide comprehensive care, clinicians must put themselves in the patient’s shoes, understanding their perception of the disease, the challenges they may face, and how they interpret their diagnosis and treatment options.
Unfortunately, many patients are diagnosed at advanced stages and often do not complete their treatment. Addressing the underlying reasons for this is crucial to ensuring better treatment adherence and improved patient outcomes.
Managing Ethical Dilemmas While Upholding Patient Confidentiality
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.
The Disclosure Of Hormonal Therapy In Fresh Partnerships
Navigating the issue of disclosure, especially regarding cancer diagnoses, is complex and largely dependent on context. Disclosure is inherently subjective, and in certain regions, there are legal frameworks, such as the “right to be forgotten.” This principle ensures that cancer survivors are not subjected to financial discrimination once they have been declared cancer-free. The idea is that a past diagnosis should not define an individual, and they should be able to resume a normal life without it affecting their future.
However, in many places, discrimination based on a cancer diagnosis remains a significant challenge. Many patients report facing termination or being passed over for promotions simply because of their diagnosis. This highlights the urgent need to strengthen support systems that assist patients throughout their journey.
When it comes to personal relationships, disclosure really depends on the specific context and the individuals involved. It’s important to approach disclosure with caution, sharing sensitive information with trusted individuals and considering the potential implications of such disclosure. Ultimately, the decision should be evaluated on a case-by-case basis rather than applying a blanket, one-size-fits-all approach.
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On How Cancer Care Facilities Can Upgrade On Mental Health
Mental health is a critical area where clinicians often struggle to provide patients with the support they need. The stigma surrounding mental health remains a significant barrier. When we advise patients that counseling is an important part of their cancer journey, many become hesitant due to the societal stigma attached to it.
Another major concern is the cost of counseling and psychosocial support. These services are not one-off treatments, and over time particularly during COVID there has been some improvement in access. However, they still remain financially out of reach for many patients.
In fact, many patients we recommend these services to look at the cost and ask, “Daktari, si nipoone kwanza?” which translates to “Can I heal first and then get the other treatments?” As clinicians, we emphasize that mental and physical healing must go hand in hand, and we continue working on improving access to wellness services behind the scenes.
There is a significant opportunity to normalize conversations around mental health and related concerns. Moreover, we must consider how to integrate these services into standard care for all patients, especially those with long-term health issues like cancer. Any chronic health condition has psychological effects, significantly impacting the quality of life. Acknowledging this and addressing the long-term consequences such as anxiety and depression is crucial.
We are working on developing sustainable models for mental health support in our setting, which could include peer support, patient and caregiver education, and other resources. These are some of the areas we, as a cancer care team, are focusing on to better support our patients.
By Dr Miriam Mutebi, Consultant Breast Surgical Oncologist at Aga Khan University Hospital, Nairobi
