Q & A with Dr Ednin Hamzah

On 17 March 2021, APHN hosted its first webinar of 2021! We were honored to have had Dr Ednin Hamzah, CEO of Hospis Malaysia, deliver his incredible presentation on Practising Patient Centred Care in the Community.

We had a staggering number of over 550 participants joining in on Zoom!

Due to time constraint, we were not able to get through all the questions posed during the Q&A session. Dr Hamzah has kindly answered the remaining questions in his own time:

*Participant names have been removed for privacy purposes

Q: Hi Dr. Ednin, I’m curious to know how are the team members being kept with good mental health before or after seeing the patients, as from your presentation you do talk about you want a “hopeful” interaction with the patients. Thanks.
A: A few things. The selection of our ‘team’ plays a part. We try and employ those we feel treats this as a vocation. Normally within several ones, those that perhaps feel that this work is not for them will leave. Those that stay, will get the required training, done mainly through reflection and experiential learning and mentoring

Q: Do you treat only end of life patients, or do you also use a true palliative care approach and treat other chronic illness patients?
A: No. We are happy to happy to see even patient’s at stage 1 at diagnosis. ( very occasionally get that for psycho social issues ). We really advocate being referred as early as possible so that we can prepare a care plan for patients and families. However, the perception from others ( including many palliative care organisations unfortunately ) is to focus on those with very poor prognosis. Many oncologists tell their patients …’its not time for palliative care’. We deal with any patients with palliative care needs, including organ failures, degenerative diseases and frailty such as dementia but these patients constitute perhaps 10 – 15% and again many of our hospital colleagues do not think about referring them. The emphasis in the past 10 years is the development of hospital based palliative care and virtually no investment for the community. And many of my hospital based palliative care specialist prefer a disease centred approach. Here’s our website: https://www.hospismalaysia.org

Q: Dr, how to refer a patient to you?
A: A link to our referral form  https://www.hospismalaysia.org/resources/

Q: Is your service for adult care only ? is there equivalent service for children’s palliative care in the community setting
A: We also see children but perhaps only about 5-7% of our cases are below 16 years. I did have a peads palliative care doctor before but she has moved back to hospital. The issue with Paeds PC is a little different as there is usually still significant disease modifying treatment to negotiate and higher levels of hope for a favourable outcome. Many of our paeds cases stay with us for years. A few years ago, we participated in a documentary series on paeds PCC, Little Stars. http://littlestars.tv/news/little-stars-malaysia/ If you click on the short films and then Asia, you will find 4 short films about 4 of my little patients.

Q: Could you introduce the team members? (e.g how many doctors ,nurses, social workers?)
A: I have 4 doctors, 13 nurses, 1 occupational therapist and 2 pharmacist on the front line. The nurses are our main line but although their base profession is that of a nurse, we try and equip them with other skills through training with physicians, psychologists, social workers and grief therapists. Being in a community setting, the ‘nurse’ should be able to diagnose medical conditions such as possible spinal cord compression, bowel obstruction, deal with psychological distress, family conflicts, grief issues etc. Our Swiss army knife approach.

Q: Thanks Ednin for a very comprehensive discussion. My question: How does this pandemic affected community palliative care since most are afraid to go to the hospital even for ambulatory patients. Since preference (patient’s wish) for patient-centered care. How did it affected your human resources and administratively and how your team coped. TY
A: Palliative Care is specially suited in dealing with uncertainties. The pandemic has just amplified it such that the public is facing many of the emotions and anxieties that patients and families already have. We have not stopped during this pandemic and although we require greater care is assessing risks to both patients and staff, it has not been a major issue. The team derives its strength from each other. We monitored levels of staff distress from the onset of the pandemic and we have contingency for staff support but within a short time, found incredible levels of resilience within the team. Important to develop a team ethos. During the past year, certainly administrative and public events have been significantly affected and from time to time, members of the team have to undergo quarantine and testing due to contact with possible Covid-19 patients.

Q: In your slide it shows that the palliative care personnel’s who are visiting patient at home wear face shield and mask without PPE level 2. Could you please comment.
A: Most of the pictures are taken before the pandemic. We are using national guidelines so patients are stratified in terms of risks and appropriate levels of PPE utilised including full PPE to be used for high risk patients.

Q: Dr. Hamzah, do you think the realization of “realistic expectations ” is important for our patients?
A: I think it is important to try and find out what expectations patients have, why these expectations are there, what values underpin them and the meaning if these expectations are able to be fulfilled. If we then feel that the actual literal aspect of meeting those goals are unlikely, the work is to distill the values and meaning of those expectations into a different but related objective that may be possible.

A huge thank you to everyone who attended the webinar session, we were truly overwhelmed by the great response! Stay tuned for the announcement of our next webinar session in May!

Published on: 26 March, 2021 | Last modified: 12 April, 2021