There are three major ethical issues described by palliative care teams. The first is the difficulties experienced at the end of life by patients, their families and members of a palliative care team in a medical system that is not yet fully educated in the concepts of palliative care. Medical Director at Al Malath, Mazen Al Bashir explains:

‘ There’s tension between our [hospice] regime of what needs to be done, or not what needs to be done, but what we want to achieve, and the other medical profession’s paradigm. We think of the human being, the whole person and the family, and those guys [oncologists] are really focusing on the size of one of the tumors in the brain for getting the drugs for it. But there’s a human being around that tumor. We want to do what we need to do, but like somebody’s who’s gasping, they want to give them a drug or give them a shot of chemotherapy, or whatever, or somebody who they record the blood pressure and according to the doctor they are showing liver failure, renal failure, and [the patient] is on a respirator in the ICU studded with metastases everywhere, and they decide to do renal dialysis.’⁷⁹

To some extent, it is hoped, that this issue will recede as more health professionals - at undergraduate, post graduate and professional development levels - receive training in the concepts and practice of palliative care, and as there is more public education around end of life care.⁸⁰

Closely linked to this ethical dilemma is the second problem that palliative care professionals reported; distress in the families at withdrawal of active treatment, including food, drink and infusions, in the last few days or hours of life. Both organisations, Al Malath and KHCC, found families were best supported by the hospice team ensuring the situation was fully explained and discussed with the caregivers before death became imminent. This discussion with families is a key element of the hospice care and includes the general education and support offered to family caregivers throughout the end of life period.⁸¹

Difficulties arise also around a third area - disclosure of diagnosis. Nisreen Al Alfi, nurse at KHCC explains:

‘ I think another problem is problems of disclosure, this is not a problem for all [patients] but we have faced this quite a lot at the beginning. The best thing is if the patient and the family are informed and they decide for themselves. I think with training for the primary physician [in how] to talk about prognosis and so on will make our job is easier. The team often can’t do anything with the patients, because we have been faced with rejection sometimes – the patient is angry, “I want my primary physician, who are you to tell me, like what I am going to do, why I’m going to die.” … there were problems of disclosure and confidence patients have with us.’⁸²

However, both organisations report that where the team is sensitive to the needs of patients, families and their physicians, and where there are more opportunities for training in communication and education of the patient and families, these issues of disclosure and acceptance at the end of life have shown signs of change.