Death is something that is inevitable. Yet, not much care or thought is given to how we will prepare for this final stage in life. The uncertainty causes discomfort but planning and making reparations for one’s passing with a trusted medical advisor can sometimes be a relief.
We tackle the issue of misconceptions on preparing for a loved one’s final stage of life, as Darlene and Sarasvathy share their beliefs about their outlook on dying and in viewing the end of life options with an open mind.
Meet Darlene Hong, who began her first job after graduating as an Advance Care Planning practitioner in Singapore General Hospital. She thrives on listening to people’s stories in exploring and learning about the different cultures and traditions of people.
Meet Sarasvathy, a Senior Counsellor at HCA Hospice Care and believes that fate brought her here. She’s equipped with a knack of humour and wit, while being bounded by her values to treat everyone with kindness as she believes that at the end – only kindness matters.
What is a life worth living?
Darlene: To me, it’s about doing everything to my best ability and not having any regrets. I always tell myself that if I want to do something, I will do it with everything I have and to do it to the best of my ability. If it fails, I would just let it be, because we’re not able to succeed in everything. People are going to criticise, knock you down and disagree with you. However, if your action is s’ rationale and intent is good, people will see it.
Saraswathy: To me a purposeful life is whatever I find joy in. If I’m passionate at making roti prata and someone compliements my roti prata, then that alone will suffice as happiness to me, as I believe in giving meaning to my own work. For me happiness comes from within – if selling roti prata makes me happy, then I will continue selling it. In the end, only kindness matters. And not to forgetting a light touch of humour! We come arriving in this world with nothing and depart from life with nothing too. I treat it as an honour for me to be present at the patient’s end of life.
How unlikely is the situation of having a Chinese family and an Indian Social Worker being present together, while witnessing the patient’s end of life? I believe in my field of work, there are things for me to unlearn, things for me to share and at the end of the day, it’s all about developing a relationship with our patients. Why would you tell your darkest secret to someone you don’t even know at your passing hour? I feel that there must be a reason for me to be there and witness the passing of the patient – that reason alone, shows that it is an honour for me to serve.
“Advance Care Planning(ACP) is like buying insurance, you buy something that may not come, but you put it out there for people to depend on.” – Darlene
Darlene: I have already done ACP for myself. In the event that I meet with an unfortunate incident or suffer a neurological disorder, I told my family that I would like to exhaust all available options and to continue fighting for my own survival. I believe that I am still young and there are many things that I have yet been able to accomplish. My father on the other hand, mentioned to let him go, in an event when he’s struck with a heart failure. The importance of ACP came into play, when my father struggled with my grandmother’s illness and we were told to prepare for the worst.
Sarasvathy: People buy insurance all the time and don’t ponder much about it. But the term ‘death’ is pantang (unlucky) in Singapore. If you’ve done your own ACP, go talk to someone and tell them about it. You don’t have to force someone to do their own ACP. It’s scary to ask questions like ‘How do you want to die’, but ACP is not cast in stone and it is constantly evolving. Even for my mother, it changes constantly for her. When she sees a patient with NG-tube (nasogastric tube)^, she tells me that this is what she do not want and I take note of it. My job is to hold patients’ hands and fulfil their wishes. As long as what they wish for is not immoral or illegal – if we can do it, we will do it. ACP changes constantly, from watching a movie to a sudden death from a relative. We all evolve in life and your ACP evolves with you too.
^ NGT: Nasogastric intubation is a medical process involving the insertion of a plastic tube (nasogastric tube or NG tube) through the nose, past the throat, and down into the stomach.
What do you wish people knew more about end of life and palliative care?
Darlene: I believe it’s about spreading awareness of the issue on death, and for people to understand the importance of making a smooth transition from hospital to hospice care. Many patients don’t know the existence of hospices and they just head directly to hospitals. While many are quite clear that they want to be comfortable, I feel that we can spread more awareness of what choosing a hospice entails and to integrate it into society. Hospice care goes together with ACP and although it might be a sensitive topic, we’re using all channels of communication to raise awareness now, from social workers to hospitals. It’s mainly the lack of knowledge and awareness that’s preventing people from receiving better care.
Sarasvathy: Palliative care is an option Although it may not be your option, but it is an available option. You will not go through this alone. There’s support and help readily available, so you don’t have to be fearful of the process. There are many patients out there who are going through the same process too. You don’t have to be fearful of death – while undergoing the process of receiving palliative care as there is always someone to guide you for support. You may be nervous at first, but it’s normal and there’s always someone’s hand out there for you to hold on to.
“If you live you have to die. Even green tea has expiry date, so why are we the exception? Everyday, we wake up one step closer to our grave.” – Sarasvathy
Darlene: I would spend time with those who matter the most to me, update my ACP and tell my family my situation – saying what I want and don’t want to do in my remaining time. I would eat, travel and do whatever I want. To me, dying is about leaving behind good memories with people whom you were close to.
Sarasvathy: My job is not to impose on patients, just to be present and sometimes expose the knowledge about ACP to patients. They will ask questions such as, “‘What is hospice care all about?”’ That is the time when we interfere and let them know more about ACP. Although they may be ill, but their brain still remains intelligent. I believe they will say it when they are ready, as everyone are ready at different times. There are patients that believe suffering is important and thus they need to go through with the suffering, for reasons pertaining to their own religion beliefs.
Some people reject morphine, as they want to remain strong and clear in their head while passing on. So we need to stay aware, firm, grounded and be mindful to each patient, as different people have different needs and beliefs. Patients sometimes are more open-minded to the available options that we provide for pain relief. They sometimes come with a mindset such as: ‘I come as an offering, not for suffering, my bonus is a diamond ring, so please give me the morphine’. So we give it to them as long as they feel comfortable with it (morphine). For some people they prefer to suffer due to their personal religion beliefs, thus I cannot impose nor insist for them to take morphine to help relieve their pain; but learn to respect and understand their needs and wants.
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 all about The Good Death, ACP and Palliative care here!