Advance Care Planning is the process of reflection and communication, a time for one to reflect on their wishes and values, and to let others know your future health and personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care. Advance care planning means having discussions with family and friends, especially those who you wish to be your substitute decision maker, who is the person who will speak for you when you cannot. It may also include writing down your own wishes and may even involve talking with healthcare providers and financial and legal professionals.
Advance care planning has made huge strides in various parts of the world but not so much in Kenya, where cultural practices and beliefs deter most people. It is almost taboo to talk about death and the fact that preparations for the ones you will live behind after death. A talk on advance care planning was recently held at the Nairobi Hospital lecture theatre. Healthcare professionals from the hospital and other healthcare facilities were addressed by Dr. Esther Munyoro Cege, the head of pain and palliative care services at Kenya’s largest referral hospital Kenyatta National Hospital; and a neuroanesthesist and palliative care specialist.
“Nothing is ever permanent, we’d like to have permanent things but one day we shall all leave these things behind. We shall leave jobs, relationships, family, houses and all worldly possessions behind,” said Dr. Munyoro. Planning for endings is a difficult, terrifying and confusing moment in one’s life especially if it is against the backdrop of a life threatening illness striking a loved one. Dr. Munyoro emphasized the point that depending on the issue that one maybe facing, they may have challenges in making decisions regarding; accepting or foregoing aggressive treatment; initiating or withholding aggressive treatment and withdrawing aggressive treatment that has already started.
The challenges for patients who are faced with the task of initiating advance care planning are that they also have to deal with a medical system that is unfamiliar and impersonal. Similarly, they have to deal with the fact that technology is expensive and can leave a family penniless while chasing a mirage.
“These challenges nonetheless do not mean that the conversation on advance care planning cannot be had. It must be had because if it isn’t then we are setting ourselves up for disaster later on,” Dr. Munyoro reiterated.
Dr. Munyoro also said that while having the conversation on advance care planning, it is also important that patients, families and healthcare professionals engage about advance directives. These are the documents that formally convey an individual’s wishes about the medical decisions to be made in the event that he or she loses their decision making capacity. They are written in advance of serious disease to state healthcare choices and name someone to make those choices when one can no longer speak for themselves. Dr. Munyoro emphasized the four ethical principles of advance care planning especially for healthcare professionals who may at one time or another find themselves helping patients and their families in those matters:-
Autonomy – people have the right to control what happens to their bodies.
Beneficence – do the most good for the patient in every situation.
Nonmaleficence – first “do no harm” is the bedrock of medical ethics, in every situation.
Justice – the fourth principle demands that you should try to be as fair as possible when offering treatment to patients and allocating scarce medical resources.
Dr. Munyoro spoke of the benefits of Advance Care Planning and said they could include the following:-
Ø Ensures self determination and an increase in quality of life near end of life.
Ø Research shows a decreased emotional conflict.
Ø When patients’ desires are met, patients, their loved ones and clinicians have peace of mind.
Ø There is reduced stress, anxiety and depression for surviving relatives and advocates.
Ø Advance directives and advance care planning facilitate communication.
Kenya Hospices and Palliative Care Association (KEHPCA) Executive Director Dr. Zipporah Ali while echoing Dr. Munyoro’s sentiments said that, “advance care planning was brought up at the 2014 KEHPCA conference and that it is very important to talk about it as a nation, nurses, doctors and patients.”