Let’s talk about living and dying well, today

SINGAPORE – People should talk to loved ones in advance about how they want to die. Such conversations are always too early – until one day when they might be too late.

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.

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.

MELISSA’S STORY

My personal experience in facilitating ACP with my patients is far removed from the myths and controversies swirling around it. ACP is about finding out what living well means to each unique individual, his or her values, deepest thoughts, joys, beliefs, as well as fears and concerns. It is not about death and dying, it is about helping each patient to live well and to preserve his or her dignity, until the very end.

Melissa (name changed to maintain confidentiality) was a patient who I looked after for two years from the time she was diagnosed with metastatic lung cancer. She was near death at diagnosis but responded well to targeted therapy in cancer treatment. During the two years she was on treatment, we controlled her pain and she was able to enjoy time spent and overseas trips with her family. However, predictably, her cancer cells became resistant to the drug and started to spread further.

During one of my conversations with her, she spoke of how living well meant being able to spend time with her family.

She shared her hopes of seeing her first daughter marry well and her second daughter graduate from school the following year.

She spoke of her fear of pain, of being in a prolonged vegetative state, as well as fear of being a burden to her family.

If she were to deteriorate despite a trial of treatment, she would not want aggressive interventions such as cardiopulmonary resuscitation or to be hooked to a ventilator.

She nominated one of her sisters as her healthcare proxy as this sister was level-headed and better able to make decisions under duress. Through this heartfelt conversation, her family was able to understand what really mattered to her.

Her condition deteriorated soon after and she died in the hospital in the presence of her family. When I attended her wake, I discovered her family had carried out her wishes with regard to what she would wear, the photo to be used and her preferred colour theme of white. She wanted her funeral to be a celebration of her life and her transition to a better place.

She chose a niche in the columbarium that overlooked a bench, where her daughters could sit and feel her love bathing them from above.

Current efforts at ACP are focused on patients with advanced illness and chronic disease in hospitals as well as in most community hospice care services.

If you are a patient at any of the public hospitals, you can ask your doctor about ACP. ACP may then be carried out by your doctor or anyone else who may be trained, such as a nurse or a social worker.

At this stage, while ACP is implemented in pilot projects with seed funding from MOH, there is usually no extra charge to the patient when it is done.

Though most relevant then, broaching ACP when one is seriously ill is not the most ideal. It is often too early, until it is too late.

Talking about end-of-life choices is difficult, but we do not have to wait for a crisis before having the conversation. There is a need for a culture shift when it comes to death – discussions about it have to be de-stigmatised. ACP conversations should be normalised and embraced early, conducted out of hospital settings and at the dinner table, as a process of communication between ourselves and our loved ones.

If one is not a patient of any hospital and does not have access to an ACP facilitator, one can download ACP workbooks freely available on the Internet and start the process of discussion with loved ones. One useful resource to browse for more information is the websitewww.livingmatters.sg, which is set up by AIC.

Nothing puts life in sharper perspective than death. Someone once said that it is when you learn to die, that you learn to live. Having end-of-life conversations do not hasten death. On the contrary, these discussions allow us to reflect what really matters to each one of us and to communicate so to those who matter to us.

Author: Dr Raymond Ng, the Clinical Lead for Advance Care Planning and Consultant in Palliative Care at Tan Tock Seng Hospital, member of the National Healthcare Group.