WHEN DEATH COMES KNOCKING

As our cancer statistics go from bad to worse in Kenya, we are confronted with death like a person stuck on the railway tracks and the train is coming straight at you.

Over the years, medical practice in Kenya is improving in keeping with world progress. Diagnostic capability has gone up with increased acquisition of radiology and imaging equipment and highly technical laboratories. Availability of newer drugs in Kenya is making access to treatment easier. Medical specialists in Kenya have invested heavily in training to acquire knowledge and skills to improve patient care.

The one thing we have not yet quite figured out in Kenya, is how to deal with on-coming death. When a patient has a chronic illness that is on a sure trail to death, everyone involved is suddenly caught like a deer in the headlamps.

The patient who is facing death is scared, confused and feels alone. Nobody wants to die, but when death is inevitable, there should be a better way for the one who has to deal with it to be prepared. A few years ago, I met a patient who had suffered incredibly from cancer. Her cancer could only be treated surgically and she had gone under the knife seven times without respite. I met her at a time when the cancer had reared its ugly head again but there was no way she could survive another surgery. Despite this information, she adamantly demanded surgery. She felt neglected and abandoned and kept moving from one doctor to the next, hoping to find the one who will do something. She chased away the terminal care team whenever they came to see her because she did not want to accept the eventuality.

As the patient suffers, the family and caregivers silently endure deep turmoil as the inevitable approaches. Different people handle it differently but the underlying emotions range from despair, anger, self-doubt, guilt and desperation. A father with young children who is caring for his dying wife will be in agony over losing his loved one and the bleak future of his children growing up without a mother. He views allowing himself to accept the on-coming death as equal to allowing himself to give up on his family. As the head of the family, one can only imagine what this means to him. He may feel like a failure, like he didn’t try hard enough to keep his wife alive, even when it is glaringly obvious that there isn’t anything anyone could do to change things.

The medical team does not fare any better in this scenario. Doctors, nurses, physiotherapists and other team members involved in patient care are repeatedly traumatized by losing patients and may have overlooked the need to find healing before moving on. Unfortunately, they must move on as the rest of the patients still need them. Long term care of a patient, from diagnosis to death, leaves one drained emotionally. Our medical team members in Kenya have not been sufficiently trained to deal with patients on the verge of death. Many feel ill-equipped to break the news to the patient and family that there isn’t anything else that can be done to avert death. Many prefer the acutely ill patient where they patient dies while the doctor is trying to save a life. But for the patient who is going to die in an undetermined period, where all medical interventions have failed, they do not know how deal with the ‘doing nothing’ phase.

Death preparedness is still a relatively new concept in our culture. This involves continued, honest, accurate communication between the medical professionals and the patient and family. For this communication to be effective, it must be initiated at the first point of contact. The doctor must take time to explain the diagnosis, its implication, expected course of the disease as per documented evidence, available treatment options (even if these options are not available locally), the expected outcomes of the treatment options, the possibility of treatment failure and eventual death.

This information arms the patient and family with knowledge on what to expect and eliminates the element of surprise. In so doing, every new situation is anticipated and mentally prepared for. There is a danger of doctors promising too much in haste to reassure the patient, making it difficult to handle negative outcomes when they come. The patient and the family, who have just received the bad news, are desperate to hang on every rope thrown at them, however feeble. When things take a downward turn, mistrust develops between the two teams and this leads to decisions that sometimes may be harmful.

Desperation to stay alive has led patients to traverse the world in search of a cure. Many of our patients seeking treatment abroad still end up with the same prognosis. They still die of the disease but what may differ is the experience of the death itself. Some will seek alternative treatments which they would never have given second thought to in different circumstances, such as traditional healers (we all remember Loliondo), religious interventions and praying for miracles.

Palliative care in Kenya is still a neglected entity. Most doctors will bring in the palliative care specialists when all curative treatment options have been exhausted. The ideal is that the palliative care specialists must be involved from the beginning of care for a patient with a chronic disease with possible poor outcomes. This allows the patient to feel comfortable with them and not just view them in association with death. They participate fully in improving the patient’s quality of life as they go through various treatments and the attendant adverse effects. With time, as the end approaches, they are able to take on a bigger role in the patient’s care as aggressive treatments are stopped.

Focus on the psychological and spiritual aspect of the patient is as critical as the physical. This is essential for the patient and the family to enable them to find peace. If a patient can feel death coming and is able to be calm about it, then even for the family, acceptance is much easier. I have seen the hospital employ a cello player who would be called in to sit in a corner in the patient’s room, playing soothing music as family bid their kin farewell.

As caregivers, it is our duty to ensure the patient is fully supported to accept death, help them put their affairs in order and allow them to move on to the next world with dignity. Death preparedness should be every patient’s right, not a privilege!