Bridging Healthcare & Patients for a fulfilling final Innings

Dr. Felicia Chang, Palliative Care Practitioner- Beacon International Specialist Centre Sdn Bhd

Her journey in palliative care started as a junior doctor when she was posted to her hometown in Sitiawan, Perak. She witnessed one painful death and felt absolutely helpless. That experience had motivated her to pursue palliative care as her career path. Dr. Felicia promised herself that she would help her patients to die more peacefully and with more dignity.

Moving from public hospital to hospices, she started to accumulate knowledge and refined her skill to provide good palliative care to her patients. The more she learned, the more she realized that palliative care is essential for patients facing death.

Right now, serving as a palliative care practitioner in a private hospital as well as seeing patients at home as a homecare doctor; she found that patients need both services. In hospital, they can deal with acute issues and reversible conditions. Although most patients prefer to die at home, many would be comfortable to die in the hospital, as they may not cope with the complexity of the disease.

“What inspires me to continue with what I do? It is the knowledge that I can help another individual to live their life to the fullest before they meet their Maker and to be able to help them to die more peacefully. This is my calling, not my job”, says Dr Chang.

Dr Chang was chosen the winner in the Humanitarian & Voluntary Service category of the Ten Outstanding Young Malaysian Award by Junior Chamber International Malaysia in 2015, in recognition to her dedication and compassion. She was the only female recipient among the eight winners. Team ABT reached out to her to know more about her interesting journey, captured in the interview below.

Have you had any role model and any derived Inspiration from them?
I am blessed to have so many great teachers to guide me ever since I embarked in this journey but one guru stands out. Dr. Rosalie Shaw from Australia has always been my inspiration. Her love for her patients and her gentleness with them showed me that we could reach out to patients if we really care for them. As a teacher, her teaching is very precise and to the point. She continues to serve even in her old age. I salute her for her dedication and perseverance.

What led you to the path of Healthcare as a profession?
I contracted childhood polio at tender age of 1. So, for many years I was a patient. I saw how doctors helped my parents and me during those years of seeking treatment. I wanted to be like them. To offer help to those who were in need. Being a doctor means I could help another fellow human being. In palliative care, we cared for patients holistically – physically to control their pain and symptoms, emotionally when they are sad and grieving and spiritually when they are uncertain about themselves. So this vocation is perfect for me.

Tell us about palliative care, its reach and what makes it a unique healthcare provider?
Palliative care is an approach to help patient to live their remaining life to the fullest. It helps patients to have good pain and symptom control so that they have the capacity to deal with their emotional roller coaster. It is about finding meaning of life in a devastating situation and finding peace with God, with themselves and with the people around them.

Although palliative care has been in the country for more than 20 years, it is still a relatively young discipline. We are only beginning to see more awareness about palliative care among the medical professions and public in the last 10 years. According to a research, at least 50,000 people need palliative care in the country every year but only a small proportion of this receives it. The reason is we have very few palliative care doctors, poor awareness that such discipline exists and also, the uneven distribution of these doctors as many are stationed in big cities or towns.

Palliative care can act as a bridge to connect patients and other health care professionals. Our strength in pain control and communication help not only our patients and their family, but also our colleagues from other disciplines as well. We focus on multidisciplinary team approach involving oncologist, physician, surgeon, nurses, dieticians, physiotherapist, counselors and palliative care team.

“Despite advances in palliative care, many are still being left to die in pain, in discomfort and without dignity”. WHY?
Poor awareness about the service and what it can do may be the problem. Doctors and other healthcare professions may not understand what we do. Many still believe palliative care is only for patient who has cancer and who is dying. So referral comes in late. Some never reach us.

When doctors refer patients in the earlier stages of their diseases, we have the time to build rapport to find out what are their preferences. We have time to adjust their expectation and to prepare them for various symptoms. Pain management needs time. We need agreement from patients and family to adjust our medications. There are people who still believe morphine is addictive. They believe morphine is used only when patient has severe pain. So with all these myths, even doctors are withholding pain medications.

When a patient is in pain, that person may not want to take medication for fear of addiction thus when the pain comes it is excruciating. The only way is to educate our colleagues, patients and family. We need to make known that we see patients other than advanced cancer. We need to make known that best treatment outcome comes with early referral, than only can we start to hear fewer stories about patient dying in severe pain.

What is the importance of “End-of-Life-Care”?
Everyone wants a good death, including you and me. But what is good death? It is how the patient wants to die. The importance of ‘end-of-life care’ is about providing a platform for patient to die as he wishes.

In end-of-life care, we have serious and important discussions. We want to make sure they are prepared for the eventuality of death. Have they got their house in order? Have they got their will or legal documents done? Have they thought about ‘do not resuscitate’ order? How do they feel about that? Where would they like to be cared for during the last days? Who would be the proxy to make medical decision for them?

These are hard questions. We are asking patients and family to make decisions based on something that is going to happen in the near future. Some accept but many felt angry when dealing with death. So as palliative care team, we want to be there to raise these questions and also guide and support them during such discussion. Not all deaths are good death and we have come to accept that. All we could do is to be there for them and not to abandon them even when they refuse to accept death is imminent. It is not an easy task but palliative care teams are trained to deal with the task. I salute those who have chosen this path to walk side by side with patients towards the end of their life. 

What are the challenges you face for maintaining the nurses and funds?
One of the greatest challenges is retaining palliative care nurses. The nature of our work is based on their resilience in dealing with patients and family. It is tough job. The nurses are expected to deal with various emotions outburst, the unavoidable end-of-life care which could take a huge toll on their physical and mental health. Many leave because they could not cope with the demand of the work.

My nurses are encouraged to write a diary about self-reflection writing on their emotions when dealing with patients. We want them to be aware of their emotions and help them to deal with it. Often time when we notice the burnout sign, we give them an avenue to talk about it. Sometimes even some time off for them to deal with the burnout. Selfcare is something we advocate strongly. We can only take care of others when we know how to take care of ourselves. As I am working in a private hospital, fund raising is not relevant to my practice.

What would you like to achieve in coming years?
Teamwork! I believe we can only deliver a good service with a good team. Oncology-palliative collaboration, hospital-homecare collaboration, clinical-research collaboration are needed to ensure that our patients receive the best care from us. Multidisciplinary team approach from various disciplines is also my focus in the coming years. It will be an uphill task but not impossible. After all, when we chose the medical field, deep down we want to contribute to good care. That will be our connecting point!