End-of-life care

Recently, a listing evaluating 80 countries in the world in terms of quality of end-of-life care highlighted the poor emphasis our country and our medical community have given to the terminal stage of a patient’s life. The Philippines is considered to be one of the worst places to die, based on the 2015 Quality of Death study index. We ranked 78th, just better than Iraq and Bangladesh.

Commissioned by the Singapore-based nonprofit Lien Foundation, the study has five categories that were assessed to measure the quality of death index. These were palliative and healthcare environment, human resources, affordable care, quality of care and level of community engagement.

This came as no surprise because we really have inadequate healthcare facilities and specialists that can provide good palliative or end-of-life care. The government has also not been very enthusiastic in developing and promoting national palliative care programs, probably with the mindset that our resources can be more cost-effectively allocated for patients who still have a good chance of surviving their disease.

Palliative care

Different from curative care, palliative care no longer aims to treat the disease, but to alleviate the terminal patient’s sufferings so he or she could go in peace. 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 emotional stress of both patient and his/her family.

We 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 it’s 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 anymore to tell the patient and the relatives what to expect and how to deal with it.

In palliative care, 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.

Many of these terminally-ill patients have made multiple trips to the emergency room, or have been admitted to the hospital several times due to worsening symptoms. Sensing 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 stay in the hospital.

A ‘good death’

For some patients, the relatives may decide to keep them in the hospital up to the very end, and it’s time 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; 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 as 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 being a totally impersonal manner of dying, 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.

Experts at palliative care prepare the terminally-ill patient for a “good death” by giving them a clear concept of life and death. Introducing the concept of a “good death” to the family of the dying patient as early as possible when death is already imminent can minimize some relatives’ reluctance to discontinue extraordinary modalities of treatment like hooking the terminal patient to a mechanical respirator, even if the patient is already brain-dead.

For both the medical team attending to the patient and the relatives of the patient, it’s more of an emotional decision to continue dispensing unnecessary, sometimes inappropriate treatment until such time the relatives have already accepted their loved one’s fate. But having a concept of a “good death” can help the family’s objectivity in deciding to finally let go of the patient.

It is also important that in terminal cases, all caregiving should be consistent with the patient’s wishes and advance directives, if such were given.

It’s about time that we give end-of-life care in our country more attention and resources befitting a terminal patient and his/her inherent right to go in peace and with dignity.