Death has always been a touchy topic. How many times have families shunned the idea of talking about death casually? Many see it as taboo, some others, as something to fear talking about. The moment you talk about death, Mothers shush kids and the topic is immediately closed after chiding the child about it. It cannot be denied however, that death is and will always be there. All will taste death.
Meet Nur Hamizah. An Intensive Care Unit (ICU) Nurse for seven years, she has since moved on to hospice care. Her stance is to remain grounded and equally hopes that her patients can live with dignity and integrity. She has been in HCA Hospice Care as a Palliative Care Nurse for over two years and more to come.
How did you first join hospice care as a nurse?
Hamizah: Being an ICU nurse, I’ve seen many deaths. Most of my patients are brain dead. I don’t see them having a dignified death. Families are pushed to a corner as there is not much more that can be done. Either we sedate the patients where they sleep and they pass on or keep them in a ward. It gets really difficult when we as hospital staff do not know how and where the patients want to pass on. I didn’t know about Advance Care Planning (ACP) when I was working in ICU, and I worked there for seven years. It was only when I worked at a hospice that I found out.
Back in 2015, I wanted palliative care for my dad. One day, someone called about a post available under “hospice care” and asked if I was keen. It was very timely, as my father was really sick and I needed to know how to take care of him. It was God’s plan. Three months after I joined HCA Hospice Care, my dad passed on. I was very thankful for palliative care as it was my dad’s wish to spend his last days at home. Being in HCA Hospice Care is truly a blessing to me.
‘Everybody dies but not everybody lives.’
Hamidah: One thing we all know about death is that – it’s inevitable. Everybody dies but not everybody lives. Death itself is a beautiful thing. We experience death ourselves among our family, relatives and friends. What I want people to know is, don’t be afraid to talk to your loved ones about dying. When you are able to talk about death it lifts the burden and makes it easier for your next transition. Speak to your loved ones, to your family members and let them know what you want and do not want.
For example, on the death bed some want to be wearing a particular shirt, or to be wearing makeup. Some want to die beautiful instead of looking sick. You have to encourage them to put on makeup, continue their daily routine like combing hair etc. All these small things get neglected, but these are the things that are important. These little things make the journey towards death a little more bearable.
‘Look at a person as the whole and not just as a sick person.’
Hamizah: When my dad was dying he was bedbound and it was difficult to bathe him. We still sprayed cologne on him, put on his best clothes and preserved some dignity of him as a person. Look at a person as a whole and not as a sick person. Sometimes we forget that not all pain is physical, sometimes it lies in the emotions. We can be too quick to give medication when someone says they feel pain. Calming the person down first could help even more than an immediate response of medicine. These are the things to teach family members, that ‘medicine’ or healing can come from the heart as well.
What do you wish more people knew about Palliative Care?
Hamizah: That it is available. Just ask. Usually no one knows until the doctor refers. Doctors could promote palliative care earlier, not until a patient is dying. Palliative care should be given when a patient is diagnosed with a terminal illness. It’s about preparing them towards the end of life. Even when patients are transferred back to hospitals, we still call them to discuss. The discussion that takes place at home is very real, the family needs to know how to manage the situation when it happens. It’s important for us to discuss with the family to prepare them for the imminent death so that they don’t panic when everything falls.
The discussion at home is very personalised. You may not see the person as a real person they are in the hospital, but at home you see it. You see the person shouting because the pain is not well controlled. In hospital it rarely happens, although they may shout as nurses come later than expected, but the conditions are more controlled. There was this patient that always complained he was in pain but whenever I visited he was always not in pain. Then one day when I visited, he was in pain and screamed at his wife. This was when it’s very personalised and you see it there and then and realised he’s really in pain and we really need to do something. You can see whether if the family can cope with this. But in the hospital you can’t see it as questions that are generally asked only skim the surface.
There was a situation where the nurse asked: “Is there anything you’re afraid of?’ My father said: “No, there’s nothing I’m afraid of.’ But I had to probe him: “Because of this sickness you have, do you think you will be breathless? Will you be afraid of the breathlessness that comes along?” He said yes he will be afraid. So it depends on how you facilitate and what are the questions you ask. That’s how ACP works, you ask deeper questions to prompt patients further as they may or may not expect what will happen.
What do you wish more people knew about Advance Care Planning(ACP)?
Hamizah: When patients are ready, there are those who are courageous enough that say they are ready to do ACP. “I know I’m very sick, I’m ready. Go ahead.” There are patients that we ask, “How is your condition, do you want to be at the hospital or at home?” They say, “don’t ask me this question.” When my patients are deteriorating and they know that treatments are not working, that’s when they’re more open to the idea of ACP. The questions we ask are, “Who would you want to be taken care by? Who would you want to take care of you?” We also discuss their fears and we ask specific things. We rope in the family members and observe how the family see the patient’s symptoms as it has the greatest impact on them as caregivers.
ACP can be done at any point of time if you are ready. Everyone can do ACP as it’s not cast in stone. Even if you come to the hospital to do ACP, they will still ask if you want to get treatment. For people with dementia, there’s always a substitute decision maker. The conversation will always be with family members and they have to think for the patient. I once had a patient diagnosed with dementia and we ask her what mattered to her, she replied: “eat sweet stuff, not to get my leg amputated and live comfortably.”
How can doing Advance Care Planning(ACP) earlier help families?
Hamizah: Doing ACP earlier helps to lift the burden off family members. It is a very personal question that pertains to what a person wants when he/she dies. Don’t be afraid to talk to your loved ones about death and dying. It can be done in different stages of life. If you have done it, you should let your family members know as only you and the hospital will know. It’s changeable and it can be done with a lawyer as well.
Doing it when you’re healthy means you start opening the conversation. You can just talk to someone. When watching a movie and some tragedy happens, you can add on to question your family, if this happen to you, how? It doesn’t have to be formal, just ask a question a day at a time.
Despite claiming to be nervous, Hamizah puts on a calm and composed front in sharing both her experiences and knowledge. She’s passionate in expressing her views and shows how much she cares and values her job. Check out her good advice here and find out all about The Good Death, ACP and palliative care here!
The Good Death seeks to transform the negative notion of death itself and is focused on promoting early planning for one’s end-of-life care, especially so for adults over the age of 50. Find out more on what you can do to lead a more meaningful and ‘Good Death’!