When it comes to one’s last wishes, difficult decisions sometimes have to be made by medical providers together with family. We tackle the issue of how medical ethics and specialised care can help patients who are facing death, and address misconceptions from an ethical viewpoint.
Meet Dr Anantham Devanand, who is Deputy Head of Lung Centre, Singapore General Hospital. His expertise deals with respiratory and critical care, where his work often involves meeting patients near their end of life.
“A large part of ethics is to help doctors understand what are the ethical duties that doctor have in treating patients of end of life … dealing with helping people confront death and manage the dying process is very challenging, thus we support them.”
Meet Dr Chong Poh Heng, Medical Director of HCA Hospice Care. With a passion for pediatric work and harbouring a gift for comforting patients, he has since decided to marry his gifts into devoting his life into his work at HCA Hospice Care.
“I believe there is beauty in little things that people may not notice, in which I carry that into the philosophy I hold at work. It is important to note that when people are shrivelling or being reduced to their illness; there is still beauty beneath what we can’t see.”
Why is it important to involve the family in discussing Advance Care Planning(ACP)?
Dr Devanand: I’m trying to use my experience to help me deal with my patients. Although my patients may be well and we’re talking to them, we owe it to them to ask if they want the family to be involved as well. Some people are ready and some are not. Sometimes it’s the patient who wants to talk about ACP or sometimes, thecaregivers are the ones that are ready to talk about it as well. Patients with caregivers who constantly give care and support, are usually understanding of the burden of care and will be both willing and ready to discuss the subject. Those who are not ready to talk about ACP, are usually removed or have not been directly involved in the care.
Dr Chong: We have to probe patients sometimes by asking them questions in hypothetical situations. In cases where active treatments are involved, there may be pain involved in the process. It is a delicate balance of opinions between the patient’s will to reject the treatment, or accepting the family’s wants of keeping the patient alive as long as possible. We need to get third parties such as their families involved, to understand from them what isare their understanding of the patient’s characteristics or wants they may have, while understanding the family’s situation. Having a close kin involve may help ease the patient’s discomfort of speaking about ACP too.
“Most people at their end of life are not afraid of death – the dying process is what terrifies them.” – Dr Devanand
Dr Devanand: I must make sure that before the patients understand their disease and the prognosis, I must understand the patients well too. I try to do it whenever possible, as it will happen one day but we don’t know when. So I encourage them to bring a close kin over to talk together. It gives me information to see who they bring and check the next of kin’s understanding of the illness. Sometimes patients and families have different viewpoints of the ACP. Thus I believe we don’t only serve patients but the people around them as well. It’s in the patient’s interest, that everything is settled for them, as opposed to having conflicting opinions in the background, that will disrupt their recovery. There’s no point talking about ACP if you don’t understand your own illness. Moreover, different illnesses present different challenges when as end of life approaches.
Another insight that I will like to share with caregivers is that, most people at their end of life are not afraid of death. Based on my experience, it’s usually the journey to death that is terrifying for them. Such as the loss of ability to speak or losing independence; these are the challenges that ACP is used to help patients to by documenting their preferences.. Once on this journey, death in many ways can be a release from suffering. Palliative care does not accelerate death nor is it meant for taking short cuts. But to alleviate the dying process and to make it more tolerable for the patients.
Dr Chong: We can’t force people to do ACP, but we need to respect everyone’s own limits. It’s good to have zeal, but everyone have different needs and wants. We need to respect their limits and to be mindful of how we approach them, by understanding what is it they truly want or don’t want to do. They may not feel ready to talk at this point, so we have to take it slowly and understand what are their constraints they are facing and , to slowly talk to with them and see when they are ready. It is a long process and everchangingever-changing process, it’s good to have zeal but hence it’s important to be patient and understanding of different individual’s needs and wants.
“Everybody has an expiry date, but death can be beautiful.” –Dr Chong
Dr Devanand: Palliative care doesn’t mean giving up, but to help with relieving symptoms for the patients and it can go hand in hand with active care. A study from ‘The New England Journal of Medicine’ has shown to a certain degree, that lung cancer patients who got palliative care earlier, got a lot less treatment and lived longer. If you’re happier, more active and symptom- free, you may live longer. These sort of studies prove to a certain extent, that palliative care and therapeutic care do not have to be sequential. Palliative care can happen even at the same time. Then palliative care can increase while therapeutic care decreases – or vice versa. One of the things that I’ve seen from unsupported patients who have died is that they tend to do nothing and wait for the inevitable. They waste their limited time and wait while counting down their days. I feel that we should appreciate life, a day at a time and live in the moment. It would be wonderful if dying patients are supported to do this.
Dr Chong: Start reflecting on what we have done and to have no regrets; to always be prepared as death may occur anytime and anywhere. Once the patients are prepared and have fulfilled their wishes, they will be more accomodatingaccommodating and willing to talk about death. Usually when you watch movies, you go to watch a happy movie and expect to laugh. When you think you’re seeing a sad movie and you can still come out smiling – that itself is an amazing accomplishment. It goes to show that grief will always be there, but we can change our outlook of it. If we’ve done all we can in life and lived without regrets, then that is a life well- lived – no matter what others say.
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!