‘Good death’ in end-of-life care

Doctors are well-trained to handle the science of illnesses. But frequently, we find ourselves inadequately trained to deal with the emotions of the patient who has an illness, particularly if that person is in the final stage of a terminal illness.

When the science of medicine has exhausted all known effective treatments, and there’s hardly anything more we could offer the patient, we sometimes get into an awkward situation wherein our tongues get tied and we just couldn’t find the right words to tell the patient and the relatives what to expect and how to deal with it.

During the final stages of many terminal illnesses, care priorities shift from curative to palliative. The focus of treatment is now directed to the relief of pain, bothersome symptoms and the emotional stress of both patient and his/her family.

Potent medicines treating the primary medical problem are already discontinued since these medicines can just worsen the deteriorating quality of life of the patient. Instead, medicines to make the patient symptom-free and more comfortable are given, even if it entails giving potentially addicting drugs like morphine for pain relief and strong sedatives to help the patient sleep.

Other palliative treatments may be given to relieve symptoms like nausea and vomiting, agitation and shortness of breath.

Multiple trips

Many of these terminally-ill patients have made multiple trips to the emergency room, or admitted to the hospital several times due to worsening symptoms. Realizing that the end is near, they may decide to stop taking the treatments prescribed to them by their doctors and they may just wish to stay at home rather than in the hospital.

For some patients, the relatives may decide to keep them in the hospital up to the very end, to prepare the patient and the family for what experts in palliative medicine would call a “good death.”

Simply put, a “good death” means a beautiful death, a private and individual encounter, which takes place with one’s intimate circle of family and close friends. It is also a hope-filled death and, for some, it is essential to focus on the spiritual solace based on the Biblical promise of a second resurrection where righteous families would be reunited again.

Contrast this to what some call a Western hospitalized death, which is characterized by a loss of individual choice, fear and anxiety for the unknown, isolation from family and friends, and dying in a totally impersonal manner; wherein the life is artificially maintained and prolonged with extraordinary interventions and devices like respirators and heart pumps, even if there’s brain death already.

Brain death

“The definition of death among the patients’ relatives and some health workers is the No. 1 problem, as most don’t realize that brain death is equivalent to a patient’s absolute death,” said Dr. Mary Agnes Busuego of St. Luke’s Medical Center during a recent postgraduate course organized by the University of the Philippines Manila and the Philippine General Hospital.

Dr. Busuego stressed that it is part of the doctor’s responsibility to prepare the terminally-ill patient for a “good death” by giving him/her a clear concept of life and death. She related that many relatives would argue, saying, “But doctor, his heart is still beating and he’s still breathing. Let’s not take the machine (respirator) off,” not realizing that it is only the machine that extends the patient’s life.

It is best to introduce the concept of a “good death” to the family of the dying patient as early as possible when death is already imminent. “When we are confronted by our own demise and that of our loved ones, we experience a whole new slew of emotions,” explained Dr. Busuego, adding that strong emotions coupled with an unclear concept of death can blur the family’s objectivity in deciding to whether finally let the patient go with dignity.

Good death

According to the Center for Bioethics and Human Dignity, a good death means that a patient must not have a protracted dying process. He must be given “adequate pain and symptom management, and have enough preparation to attain a sense of emotional completion.”

The doctors and other caregivers should respect the patient’s and family’s decisions regarding treatments, mechanical ventilation or breathing support and other interventions. At this stage, all caregiving should be consistent with the patient’s wishes and advance directives if such were given.

Ensuring a dying patient’s final days are as pleasant as they can be is indeed a major challenge for many physicians and healthcare professionals. But it is just as important a goal as prolonging a patient’s life when that is still possible. At the end of the day, a good end-of-life patient care also comforts the dying patient just as he or she loses consciousness and that somehow, the journey of his/her family from denial and grief toward acceptance and healing would be eased. The patient would be comforted by that thought as he finally breathes his/her last and leaves.