COVID-19 is a clarion call for Advance Care Planning, highlighting how an unexpected and sudden health crisis increases the urgency of making our care preferences known.
The COVID-19 pandemic has irrevocably changed our lives — how we work, how we socialise, and even how we eat. The global spread and impact of the virus have demonstrated that we humans are not as invulnerable as we think we are, despite the many advancements of modern medicine. The COVID-19 virus has afflicted young and old, rich and poor, and brought many of us, perhaps for the first time, face to face with our mortality.
In pre-COVID times, acute serious illnesses could happen to anyone at any time as well — a sudden bout of acute pancreatitis triggered by previously silent gallstones, an insidious skin infection in the leg from poorly controlled diabetes resulting in septic shock, a road traffic accident causing severe irreversible brain injury. But these incidents of human vulnerability and mortality were largely kept away from public view, contained by the healthcare teams in hospitals; the resulting grief and loss, no less painful, leaving their indelible marks on individual families rather than whole nations. Now, we cannot hide from death. Every day, we receive news on the rising caseloads and death tolls worldwide. COVID-19 is a stark reminder of what we have always known but do not openly acknowledge — anyone can suddenly fall seriously ill.
We need to change, en masse, our attitude towards talking about death and dying, and embrace having these important conversations early with our families and healthcare practitioners.
In a serious illness, healthcare decisions are complicated, with no single best answer. With the advice of the healthcare team, the patient can then make a choice after weighing the benefits and risks of various treatments, based on their own personal values and goals. But when someone becomes seriously ill and is unable to make decisions for themselves, it becomes very challenging for their healthcare team. Without knowing a patient’s unique preferences and values, healthcare teams default to choosing treatments that aim to prolong life as much as possible, as well as consult patients’ families or loved ones to make decisions on treatment options.
However, in our experience, most family members are uncertain as this topic has never been discussed before. In the face of time pressures, we have witnessed how this uncertainty causes significant stress to the family members who struggle to make decisions on their loved one’s care. This is why we are calling for people, even those who are young and well, to do their Advance Care Planning (ACP).
ACP is a series of conversations where a person’s values and preferences are shared with their loved ones and healthcare providers. These values and preferences are what shape an individual’s healthcare decisions. They are unique to each individual and allow for person-centred care. These conversations are documented and used to guide both family members and healthcare teams when the patient cannot make decisions for themselves during serious illness. When you are well and have the time and mental space to think about what matters most to you, do your ACP; it allows you to achieve a clear understanding of what your health journey may look like, the potential complications that may occur, and the risks, benefits and trade-offs of various treatment options.
The Circuit Breaker period created many challenges and even a certain degree of suffering for some, but it also brought great clarity. We began to appreciate what we used to take for granted — the freedom to simply sit outdoors and have a conversation with a loved one, to hug a friend, or share a meal with extended family. We learned that living well is more than just being physically alive. As we move forward as a country, we should not lose sight of this clarity.
We should take the time to talk to our families and our loved ones about what we value in terms of our health and lives. By doing our ACP, we could empower them with the right information so that if we cannot make decisions for ourselves, our loved ones will be able to have certainty and peace of mind to make healthcare decisions on our behalf.
To help you get started, here are some questions that you can think about and discuss with your loved ones:
What are the things in life that give me meaning and purpose?
How would I like my loved ones to remember me?
What would I be most fearful of should I become seriously ill?
If I should become dependent and require a full-time caregiver, what are my concerns and preferences?
How do I feel about the use of life-support machines?
Who knows me best and would be able to share my values with the doctors, to make healthcare decisions for me?
We plan for everything in life: our studies, our career, vacations, whom we marry, how many kids we want, and our retirement. However, studies have shown that the large majority of us do not plan for serious illness or share our values and preferences on our care with our families.
This public health crisis could be an impetus for us to turn the tide for ACP. In some countries, such as the US and Australia, there are COVID-specific advisories and telemedicine consultations right now on how to conduct and implement ACP. In Singapore, while there are some fledgling tele-health efforts to help people do their ACP, we think there needs to be a louder call to promote ACP in our population and systemically entrench it in our healthcare system. We need to change, en masse, our attitude towards talking about death and dying, and embrace having these important conversations early with our families and healthcare practitioners.
ACP is not to a panacea for the pain and suffering one might face when one is seriously ill. But it can be very helpful — for you, your family, and your healthcare team. Most importantly, the ACP is not cast in stone. As an on-going conversation, it provides a way for us to talk about our fiercest loves and our deepest fears and allows our loved ones to make difficult decisions should they be called upon. Rather than thinking about this as taboo, embrace it as a gift of love to those you care about.