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Conversations with: nurul nadiah jaafar

In conjunction with International Nurses Day on 12 May 2018, Yayasan Sime Darby (YSD) highlights the work conducted by community palliative care nurses. YSD is supporting 6 community palliative care nurses with Hospis Malaysia, who provide care and support to patients with terminal illnesses. Nurul Nadiah Jaafar, one of the palliative care nurses being supported by YSD, spoke to us about her journey so far and the importance of her job.

Nadiah, 32 years old, is one of the 18 nurses in Hospis Malaysia providing palliative care in the community to patients in the Klang Valley. 

Tell us a bit about yourself and what you do. 

My name is Nadiah and I have been working with Hospis Malaysia for almost five years. Previously, I was with the Subang Jaya Medical Centre (SJMC). After I joined Hospis Malaysia, I realised the role I was taking on as a nurse was really different with the one I had at SJMC. As a nurse working in a hospital, everything you do is upon a doctor’s orders. But as a community palliative care nurse, you have to be the eyes and ears of the doctor. Our training requires us to be knowledgeable about our work to enable us to examine and assess our patients independently each time we visit or speak to them. For example, we will perform chest and abdomen examinations, differential diagnosis etc – things you are unlikely empowered to do as a hospital nurse. 

What was the most memorable experience you have had so far? 

The most memorable experience is also perhaps the most traumatic experience I have had. It was when I attended to an emergency visit of a patient who was bleeding severely due to the cancer he had, until he passed away. He was in the end stage of his disease. We had been caring for him for some time, so we knew what he wanted, and the family was prepared. So when the emergency call came, I had to be there to support the family and to help him manage his pain. 

How did you feel at that moment? 

I was of course anxious, but it was important to remain calm in order to be able to support the family. 

What did the family feel with you being there? 

I believe the family really appreciated that I was able to attend to the emergency call and be there with them at that final hour. This was probably demonstrated by the family encouraging guests at the wake and funeral to donate to Hospis Malaysia instead of sending wreaths. 

What is the most important thing that you took away from that experience? 

For me, the most important thing to remember in a situation like that is to be aware of the situation and be prepared. You cannot be anxious or afraid. You need to provide support to the family and you must know what to tell the family in any situation. The second important thing is team support and as a palliative care nurse, we are always supported by our doctors and our fellow nurses in the team. During that emergency visit, I was able to call my doctor to discuss the situation and who then advised me on what I needed to do. Another team member was also asked to come in during that emergency visit to assist me and help support the family. 

What is the hardest challenge that you have faced in your job so far? 

Referral letters from the referring doctors which are too brief. Most of the time, we get referral letters with only the patient’s diagnosis. This is an issue because we do not know what the problems are with the patient, what kind of issues and symptoms he/she is experiencing. It is important to have a summary of the patient’s medical history and the treatment he/she has been undergoing. Sometimes, the families have not been told that the patient has been referred to palliative care. That is another challenge, as being referred to palliative care may require educating the patient and family on the aims of palliative care versus curative treatment. So in these instances, we will have to contact the hospital or the doctor in charge to get the medical history of the patient. Other times, we may have to rely on the family to obtain the patient’s medical history, and this may not be as accurate. 

What can society at large do to help those in need of palliative care? 

I think there is a need to increase awareness on palliative care. Not many Malaysians know about what we do. They think we only serve dying patients, when actually, if the patient is referred to us earlier, we may be able to provide care and support to patients by addressing and managing their symptoms, thus improving their quality of life. Often, apart from managing physical symptoms such as pain, nausea, lack of appetite and insomnia, we can also help the patient with their psycho-social and emotional issues. Our society needs to understand the benefits of good palliative care, and appreciate that this is an area of healthcare that needs to be available to all, and no one organisation can cover the needs of everyone. It has to be a collective effort to promote good palliative care. 

What do you hope to achieve out of this project? 

I would like everyone to know about palliative care, what it is and why it is important to obtain good training as a nurse in order to practise palliative care in a professional manner. 

What is the most crucial issue affecting people who are in need of palliative care? 

In Malaysia, there is a lack of support for the patients, and their caregiver and family in navigating themselves through the health and welfare systems. As a palliative care nurse, we are often seen as the all-round problem solvers. Often, in our attempt to help families resolve the patient’s medical and psycho-social issues in order to help improve their quality of life, we become their sounding board for their financial issues, as well as potential family disputes. For many families, financial constraint is their biggest challenge. Often, the sole breadwinner of the family is either the patient or is the carer of the patient. The caregiver may leave their job to care for the patient, thereby creating even more stress within the family. In many other cases, patients are referred to Hospis Malaysia after they have exhausted all their funds pursuing curative treatment for the illness. Palliative care is then seen as the choice for those who can no longer afford any other treatment. 

How do you deal with that? 

When the patient is first referred to us, we start discussions with the patient on his/her goals of care. We have conversations with them on what is important to them now that they are aware they may have limited time left. Often with constructive discussions with us or one of our doctors, much of the psycho-social distress can be resolved. If it is financial issues, then we may have to assist them in seeking support from Jabatan Kebajikan or other NGOs who may be able to support them financially. 

What are your hopes for community efforts for the elderly in Malaysia? 

We need to continuously highlight to the government the issues arising from an aging population; a population which is likely to require more support as more and more people live longer and the probability of them being affected by a non-communicable disease such as cancer or organ failure. As a community, we should all look at how we can support this aging population. As a community nurse, I can see what I can do for my patients. At Hospis Malaysia, one of the most important things we do is to identify the goals of care for each patient: what do they want for their care? Do they want to be cared for at home? And what do they need from their primary caregiver? This could be as simple as managing their pain or other physical symptoms so that they do not need to go to the hospital as often. But we cannot do everything and cannot offer our service to everyone in the country. There must be more palliative care service providers in the community and more support given to the caregivers and family members of patients. In this regard, perhaps there is a need for trained medical social workers who can help address some of the issues faced by caregivers when they are caring for patients in the community.

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Last Updated:
11 May 2018
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