Let's talk about living and dying well, today

Let's talk about living and dying well, today
The writer says some clinicians fear that broaching advance care planning takes away the patient's hope. Other patients may not be open to such talks, especially when they get better
PHOTO: My Paper

Death and dying engender complex emotions in people. To some, death is a remote event far removed from life's daily pursuits or a taboo subject to be avoided, yet, to others, there is peaceful acceptance of death as a final chapter of the natural cycle of life.

As a palliative care physician treating patients with advanced illness, I have witnessed an entire gamut of emotions and reactions to death and dying.

However, my first personal experience with death was not with my patients.

It was when my mother died when I was 18 years old. She had advanced ovarian cancer and battled the disease for five years through multiple operations and cycles of chemotherapy.

Those years were like a blur as we tried to have a normal family life, and I coped by burying myself in my studies. Though she grew cachectic and weak and was literally wasting away nearing the end, death was a taboo subject which never surfaced in our conversations.

It just hit one day when I received a phone call during my basic military training at the army camp. It was only then that I knew she had died and was gone forever. My mother died without the family's presence and with a certain degree of pain in the final stage. My only goodbye was a tender kiss on her cheek as she lay lifeless on her bed.

Perhaps my parents wanted to shield us from the spectre of dying, or perhaps her doctor did not adequately prepare us. Death and dying were issues that we did not talk about. It was not just about death and dying, there were many things I would have liked to say to or ask her, if only I knew.

After my mother's death, I entered medical school and found my way into palliative care some years after graduation. My experience with my mother was one of the reasons why I chose this speciality.

Many have asked if it is a depressing practice. Personally, it has been a rewarding experience of professional and personal growth. I have been privileged to journey with many patients in their final act of life and to be let into their life stories and deepest thoughts.

ADVANCE CARE PLANNING

Through these experiences, I have also become an advocate for advance care planning (ACP), or what most would commonly understand as end-of-life conversations. ACP is a voluntary process in which people discuss, state and document their values and wishes regarding future medical care, in the event that they are incapacitated from making decisions on their own.

In a developed country like Singapore, most people will die after experiencing a chronic, progressive and, ultimately, fatal illness. When patients are seriously ill, they are frequently incapable of making important end-of-life decisions. In those circumstances, without knowing what loved ones would have wanted, caregivers may face intense stress and feel burdened when making decisions in consultation with doctors.

ACP is not just suitable for patients with advanced illness; it is suitable for everyone, in any state of health or illness. Even when one appears to be in the pink of health, one cannot predict when medical catastrophes might suddenly strike. In this epoch of rapid medical advancement, we are technically successful in prolonging life, often with variable outcomes in terms of quality of life.

For example, a person who is clinically brain dead with no reasonable prospect of neurological recovery can be kept alive on life support for a considerable period of time.

With a rise in the consumer- and patient-rights movement as well as landmark cases, the ACP movement began in the West. By the 1970s, most states in the United States had passed legislation enabling patients to record end-of-life wishes. In 1996, the advance medical directive (AMD) Act was enacted in Singapore.

It allows a person to sign a legal document in advance, informing his doctor that he does not want the use of any extraordinary life-sustaining treatment to prolong his life in the event he becomes terminally ill and unconscious and where death is imminent for him.

CONVERSATIONS BEYOND FORMS

Early efforts at ACP were focused on completing advance directives, also known as living wills, stating what decisions should be made for their health in the event they are ill and incapacitated from making decisions.

However, completing forms alone has limitations, and recent efforts are focused on framing and implementing ACP as a deep, reflective and iterative conversation, a communication process between patients, their loved ones and their healthcare professionals. Documents, such as the AMD, are only one aspect of the broader framework of ACP.

Even when preferences are documented, they can be verbally revoked by the patient at any time and should be constantly reviewed.

Within the last two decades, there is gathering evidence that ACP as a process increases patient and caregiver satisfaction with care, improves surrogates' understanding of patients' goals and preferences, reduces post-bereavement stress and depression in family members, reduces use of potentially burdensome treatment, as well as improves quality of life near the end of life.

It is also known that patients desire autonomy over end-of-life decisions and expect their physicians to initiate these conversations.

Locally, in 2009, the National Healthcare Group end-of-life task force invited the faculty of Respecting Choices from Wisconsin, US, to train healthcare professionals in ACP facilitation and implementation.

In 2011, the Agency of Integrated Care (AIC) was designated by the Ministry of Health(MOH) to be the agency to coordinate and disburse funds to various regional health systems to implement ACP.

Since then, pilot projects in ACP have sprung up in various hospitals, nursing homes, hospices and community hospitals and home medical care teams. There are ongoing efforts at training ACP facilitators, engaging and raising awareness of ACP among healthcare professionals, patients and their caregivers, as well as setting up processes and systems to capture and honour outcomes of ACP facilitation.

Nevertheless, there are barriers to ACP practice and potential misconceptions. Some people, including healthcare professionals, may view the subject as taboo. Some clinicians fear that broaching ACP takes away hope and will send the wrong message to patients.

Patients may also not be open to ACP, especially when they are better and do not see the need to make plans. Some may also confuse ACP with euthanasia.

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