My Health: DOES A PATIENT HAVE THE RIGHT TO KNOW THEIR NEW TERMINAL DIAGNOSIS?

DOES A PATIENT HAVE THE RIGHT TO KNOW OF THEIR NEW TERMINAL DIAGNOSIS?

Dr Anil Khamis and Dr. Reuben Mogoi, Chair and Members of Aga Khan | image courtesy: the celiac MD University Hospital Ethics Committee respectively.

The case of Dorothy (not her real name) recently perplexed her attending medical team. She is an amiable, mother-like figure whom the staff have known for a number of years and has been a patient at the hospital.

She is a well-dressed, powerful woman who is a pillar of the community. She serves and leads in a host of organisations, supports and counsels her church community, and is a committed advocate for progress of all people. She is what we could call a stalwart – someone who is so concerned, so committed, and so able that seemingly nothing can stand in the way of the causes she champions.

She was progressing well – until a new diagnosis. Tis was terminal. Her daughter, serving as next of kin, is adamant. You cannot tell her of this diagnosis – it will crush her. She will go into depression. She could even suffer a spiritual crisis! What to do? Here is an ethical dilemma.

Te patient is of sound mind, articulate, and independent. She has the right to autonomy to make her own decisions, but she has to know the situation, to consider it, and determine how she wants to respond – that is if she knows. What if she does not know, what if she is not informed? Will she continue with the fullness of life with the vigour and passion she has for the many causes she supports? Will she be so adversely affected so as to not just destroy her own quality of life but also of the many others who rely on her, refer to her, and seek her counsel?

After much deliberation with the family, they consented to disclose the diagnosis to their kin.

However, care had to be taken – to manage the conversation in such a manner that considers the patient’s reaction to such devastating news. A structured conversation, following a set protocol with determined pathways, options, and choices was laid out prior to the meeting with the patient and family.

This ensured that due consideration was given to the ethics and rights of the patient – which is an institutional obligation of the hospital, her family’s concern for her care and continued well-being that is not just corporeal, and available options to progress from the diagnosis to quality care with the probable timeline of the support required.

This is our culture, our context is that the family structures and those who we regularly interact with including our community care for and about us; we are not just individuals who are only concerned with ourselves; and we belong to the community that supports us and as such are engaged in decision making for our healthcare.

It was outlined to the patient that the recent biopsy results revealed that her earlier condition had severely deteriorated. The new diagnosis – unfortunately – was terminal and no further treatment was possible. On hearing this news, despite being coherent and of good-cheer previously, the patient’s demeanour changed drastically and the profound disillusionment she felt was palpable to all in the room.

The ethical dilemmas faced in this case relate to the patient’s autonomy with full disclosure of information to enable her to make her decisions and the challenges such information presents to the patient to be able to make such decisions. Such dilemmas will remain with us and more will appear.

It is through sharing and documenting the cases, learning from our experiences, and creating structures in our care facilities that we can serve our patients with the quality and dignity they deserve whilst being respectful of our context and the needs of the many others with whom our lives are intertwined.