When Norhaslin Noh attends to a patient, she has to forget that she is just a nurse but also one who provides psycho-social and spiritual support to patients and their families.
“Forget that you are just the nurse. You are the pharmacist and the counsellor too. With that, we are able to treat our patients as a whole and are able to cover their physical, psycho-social, and spiritual needs as well.
“This is something which we were not doing in the hospital,” says the 31-year-old Norhaslin. She has been with Hospis Malaysia for nine months, and was previously a Critical Care Unit (CCU) nurse in a private hospital.
“When working in the hospital, I noticed that many patients were discharged with little support as to how to manage when they go home. “Issues such as what to expect of their illness as the disease progresses and how the caregiver may be able to cope without the benefit of a medical team around the patient, were not addressed, leaving the patient and family distressed.
“This is when I felt that I may be able to contribute more by being a community palliative care nurse,” she says.
Hospis Malaysia was set up in 1991 and is a charitable organisation that provides community palliative care services to patients with life-limiting illnesses. Its three doctors and 18 nurses care for roughly 2,000 patients who are referred to the organisation every year. These patients suffer from cancer, organ failure, or progressive neurological conditions.
Having been a CCU nurse for three years, Norhaslin says she was used to carrying out orders from doctors. However, as a palliative care nurse, she focuses entirely on the patient, adding that she also acts as an independent clinician who manages a patient’s condition.
“Whenever they have a problem and when we deal with it, we can see their face light up. We explain to them what is happening and what the treatment is.
“So the communication between a palliative care nurse and a patient is very important. It makes a big difference,” she says.
Mastura Mohd Rasyid has been a palliative care nurse for more than six years, and says she is more than just a “basic nurse”. She concurs that they are trained to be able to work as independent clinicians.
“We are trained to know how to examine a patient and how to communicate with the patient. In fact, we sometimes have to conduct family conferences independently to bring the patient and family members together to agree on the goals of care.
“In the hospital, all this is conducted by doctors. In the community, we have to function almost like junior doctors. But at the same time, we have a team behind us such as the doctors, a pharmacist and an occupational therapist. If a patient requires support with functionality, we can refer them to an occupational therapist,” she says.
Mastura adds that some memorable moments she has had with patients are the times when she helps them improve their quality of life. She says being able to achieve this helps the patient perhaps experience a peaceful death. “We have discussions with the patient and the family members on how to look after the patient, we then set the goals of care for the patient together.
“By doing this, we try and meet the patient’s preference about how they want to be cared for, where they want to be cared for, and what kind of care and treatment they want up till their end of life.
“So this is very meaningful for me to see how we have managed to enable them to live well and die well,” says Mastura, 31.
She adds that since every patient is different, she prioritises each of their needs individually.
Despite looking after 30 to 40 patients a month, Nurul Nadiah Gaafar, too, assesses every patient independently. Through that, Nurul Nadiah says she explores, together with the patient, on what is important to them so that she is able help them. Nurul Nadiah, 33, has been in the industry for close to seven years, and says she finds satisfaction when she is able to fulfil a patient’s needs, especially when they are in pain.
“We try and manage their symptoms well and that gives me relief actually. My focus is patient-first,” she says.
Nurul Nadiah adds that Hospis Malaysia’s 24-hour on-call services continue to support patients round the clock in case they face any difficulties at home after office hours.
Although the cases that Hospis Malaysia receives are those who have serious illnesses, Nisha Gunasakaran, 31, says most patients want to improve their quality of life despite their illness. Nisha adds that they also receive training on grief bereavement, hope and suffering, and symptom management, to better equip themselves in assessing patients at home.
“One difficult symptom is breathlessness. One of my patients was breathless and that confined him to a chair because he did not have enough energy to get up and walk around.
“He was a very active person before and his carer was very distresses, looking at him suffering. That is when we are there to assess what is important to improve their quality of life. He wanted his breathlessness to be at least reduced so that he could do things with his family, including the things he used to enjoy,” she says.
Nisha adds that they also care deeply for the caregivers, adding that it was important to also note how they were coping with the disease of a loved one.