Palliative care refers to care for the terminally ill as well as their families, especially that provided by an organised health service.

In caring for patients, doctors often forge relationships with them. Thus, to avoid causing perceived pain to those patients, or perhaps to avoid their own discomfort – it is not difficult to imagine that doctors would gloss over the topic of death.

However, patients need to know the truth. They need to know, regardless of how difficult it is to hear, so that they can prepare for the final chapter. The reality is that patients are often aware of their own mortality and prefer others to openly acknowledge that to be the case. Doing so allows the patient to express his sorrow without the fear of causing pain to others around him. This is especially so, where a patient has already been diagnosed as terminally-ill, and under palliative care.

That said, the Kubler-Ross model posits the 5 stages of grief: denial, anger, bargaining, depression, and acceptance. Indeed, the creator of this model, Elizabeth Kubler-Ross, was motivated by the dismal lack of literature on the topic of death. The role of the practitioner in ensuring that patients receive the best care, as they experience the 5 stages, cannot be understated. The inherently uncomfortable topic of death should not be allowed to be a barrier between doctor and patient.

Honesty is the best policy

Honesty is the best policy concerning end-of-life decisions. It is foremost, in the interests of the patient. A practical standpoint is that patients only experience death once – thus every patient is dependent on the doctor, who would have guided many patients along their final chapter. The lack of candour is an unfair denial of a doctor’s professional services to a patient.

A patient may need to know how his terminal illness may affect his mobility and health, so that preparations can be made. It would be, from the patient’s point of view, an egregious breach of trust if a doctor had failed to direct the patient’s mind towards end of life planning and advanced care.

From the perspective of a family member, knowing the prognosis helps to prevent distress from not being able to deal with “unfinished business”. Family members often wish that they had more time with a dying relative, and can remain unaware of the seriousness of the condition, even if there had been repeated admissions with deteriorating conditions. Furthermore, knowing the truth about the prognosis can be a release from the emotional uncertainties.

What can doctors do?

From the doctor’s point of view, being honest about death helps to alleviate the emotional burden of keeping the unfavorable truth to themselves. But before we even discuss how a doctor can break the news, is it even the responsibility of the doctor to do so? To what extent must a doctor communicate the reality, that is, that the patient is dying?

A doctor can often mention the possible procedures, the condition worsening, the potential ramifications – but without the mention of death, is this sufficient for the patient to connect the dots? It is not. It is understandable that patients and their families hold onto hope and unless told explicitly of the possibility of death, it is a thought that is strongly resisted. Furthermore, if there was indeed a possibility of death, wouldn’t it also be right for them to expect the doctor to tell them?

It is understandable that breaking the truth could be extremely difficult, for fear of causing distress to the patient. However, the truth is a necessary evil. It vests in the patient the power to live the remainder of his life, in the way he desires. That said, this should not be mistaken for a clarion call for a mechanical disposition of duty. Honesty is a delicate, and inherently humanistic. It has to be tempered with empathy.

In other words, a doctor should try his best to put himself into the shoes of the patient. Most importantly, the process engages the doctor’s ethical and moral sense of the situation, more so than the objective and professional. To that extent, the environment, timing, and other facts are relevant to the doctor’s decision of when and how to disclose the true state of affairs.

End-of-life is the final stage of life, which has equal importance to all other stages. Medical care is aimed at improving the quality of life, and the final chapters are no exception. The end-of-life can be a time of healing for patients and family, as well as a time for emotional and spiritual reflection. That said, time and preparations must be made for this journey.

Doctors play a key role by communicating what is necessary and what would be futile from their professional point of view, to ensure that the patient gets the best available treatment and dies with dignity. This is despite it being easier to acquiesce to the desire to leave patients ignorant of their inevitable demise. While it may be a difficult task, it is a task that rightfully belongs to the doctor. MIMS

Read more:
The role of a GP in death and dying
Doctors: Coping with patient death
Training nurses to initiate end-of-life conversations with dying patients
End-of-life care: Knowing the difference between saving lives and postponing death

Sources:
Meghan O’Rourke, “Goof Grief – Is there a better way to be bereaved?” Feb 2010. http://www.newyorker.com/magazine/2010/02/01/good-grief
Ricardo Nuila, “Whose job is it to talk to patients about death?” Aug 2015. http://www.theatlantic.com/health/archive/2015/08/palliative-care-medicare-end-of-life-ethics/400823/
Andrew Thurston, “I’m a palliative care doctor. This is what I do.” Feb 2015. http://www.kevinmd.com/blog/2015/02/im-palliative-care-doctor.html