How to live when you’re staring death in the face

A few years ago, I met a patient who had cancer that could only be treated surgically.

She had gone under the knife seven times without respite. I met her 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 and kept moving from one doctor to the next, hoping to find one who would do something. She chased away the terminal care team whenever they came to see her because she did not want to accept the eventuality of death.

We are all going to die, but death feels more real for a person with a chronic terminal illness. Seeing death coming at you like an oncoming train to a person stuck on the railway track is frightening, not just for the patient, but also for their loved ones and caregivers. As the patient suffers, the family and caregivers silently endure deep turmoil.

Desperation to stay alive has led patients to traverse the world in search of a cure, yet many 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.

WAIT AND SEE

Some seek alternative treatments, such as traditional healers, religious interventions and praying for miracles, which they would never have given second thought to in different circumstances.

Different people handle impending death 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 may feel 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. Doctors, nurses and other healthcare workers are repeatedly traumatised by the death of their patients. Long-term care of a patient, from diagnosis to death, leaves one drained emotionally, yet medics in Kenya have not been sufficiently trained to deal with patients who are on the verge of death.

Many feel ill-equipped to tell the patient and his/her family that there is nothing that can be done to avert death. They do not know how to deal with the “do nothing” phase of the patient whose death is unavoidable after all medical interventions have failed.

While nobody wants to die, when death is inevitable there should be a way to prepare the patient for it. However, death preparedness is still a relatively new concept in our culture. It requires continued, honest and accurate communication between medical professionals, the patient and his family. This communication must be initiated at the first point of contact.

The doctor must explain the diagnosis, its implication, expected course of the disease as per documented evidence, available treatment options (even if they’re not available locally), the expected outcomes of treatment, 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.

Every new situation is anticipated and mentally prepared for.

There is often a danger of doctors promising too much in a bid to reassure the patient, making it difficult to handle negative outcomes when they come. Without candour, the patient and his family, who have just received the bad news, are desperate to hang on every rope thrown at them, however feeble.

QUALITY OF LIFE

Then when things take a downward turn, mistrust develops between doctors and their patients, leading to decisions that might be harmful.

Palliative care in Kenya is still a neglected entity. Most doctors bring in the palliative care specialists when all curative treatment options have been exhausted. The ideal is that the palliative care team 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 to associate them with death. Palliative experts participate fully in improving the patient’s quality of life as he goes through various treatments and their 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 focus on the physical. If a patient can feel death coming and remain calm, acceptance for the family becomes easier. I have seen a hospital employ a cello player who would sit in a corner of the patient’s room, playing soothing music as the family bid their kin farewell.

As caregivers, it is our duty to ensure the patient is fully supported to accept death, to help them put their affairs in order and to allow them to move on to the next world with dignity.