A Personal Experience By Shazia Akhtar
We are honoured to share a blog post by Shazia Akhtar, who kindly contacted us to offer her words of support and volunteer with Al Amal. Shazia writes about her own family’s challenges as her father deteriorated from prostate cancer, and shares words of advice for others in a similar position.
At Al-Amal, we aim to fill the gap identified by Shazia in her own experience. Alongside emotional and pastoral support, we can empower patients and families in palliative care by providing sensitive but honest explanations of what the future may look like with a terminal illness, and how to support the best possible quality of life.
It was a September morning when my sister called, with the stress immediately audible in her voice, she explained that dad had got up that morning and was really struggling to walk. Although our father was living with advanced prostate cancer which had in recent months caused him to become weaker, he had still been going about his daily routine- so this change in his condition came as quite a shock. Despite having cared for our mother who passed away 10 years earlier (also due to cancer), we were not prepared for the change that suddenly became so visible; a change that signalled a new stage in our father’s illness and in his care.
The care that is offered at this point in a cancer patient’s journey is referred to as ‘palliative’ by healthcare professionals, but often patients and their families are left wondering what this really means and what this ‘stage’ entails. Much of the time, transition to ‘palliative care’ is made when there is disease progression, with the focus for treatment being more about supporting a patient rather than aiming to treat the actual disease. In practical terms this usually means managing a patient’s symptoms and needs so that the best quality of life may be achieved.
When my father was referred to the palliative care team, my siblings and I felt as though we had to reconcile our absolute commitment to secure the best possible care for him with the acceptance that the cancer was now going to take its course. We felt this way because from the outset there appeared to be an attitude of resignation imparted in discussions which focused on my fathers ‘wishes’ and so inadvertently this implied that the palliative care staff were focused on the ‘end’ rather than on optimising the care that my father was entitled to at this stage.
Looking back at the process now, it would have been far more helpful if a discussion about treatment aims had occurred when we first met the palliative care nurse, this is something that should be based on an assessment of the patient’s specific condition, belief and preferences rather than be defined by a generic approach. Palliative care by its very definition should be tailored to an individual’s condition and symptoms, this requires mutual understanding between healthcare professionals and the patient (and family). I would advise both patients and their families to insist that a detailed care plan is drawn up as soon as possible with a clear understanding of what is expected, this informs what is included in the ‘universal care plan’ which is accessible to any healthcare professional interacting with a patient during their care experience. It is imperative that both, healthcare professionals and the patient (including their family), understand clearly what the treatment expectations are and how they will be met. In my father’s case, due to minimal advanced care planning and the lack of clarity about our wishes being that all treatable and ‘reversible’ medical problems be addressed, everything was largely reactive rather than pro-active. It was only due to the fact that my siblings and I were well informed and well equipped with the relevant clinical knowledge, that we were able to secure particular treatment for our father. However, the lack of care planning and effective follow up meant that important clinical decisions regarding treatment were routinely delayed.
We found that the quality and standard of palliative care was determined by the degree to which we could advocate on our father’s behalf; this is not an acceptable situation. Since palliative care is aimed at providing supportive care to maintain quality of life, there must always be a commitment to delivering the best possible care, irrespective of the level of awareness and advocacy on the part of patients and their families. Our experience highlights the very important role that advice and accessible information plays in palliative care and for this reason organisations like Al Amal are so needed. For those families who are unsure of the process ahead, the terminology employed by healthcare professionals and what their expectations can be or should be, a point of contact such as Al Amal could make all the difference.