Commentary: Many seriously ill patients end up living for treatments
Serious illness conversations are not just end-of-life conversations. They are also conversations about the treatment or care options that best align with a patient’s priorities, say Duke-NUS Medical School’s Alethea Yee, Shirlyn Neo and Gillian Phua.
Alethea Yee , Shirlyn Neo & Gillian Phua
18 Jul 2024 06:00AM (Updated: 18 Jul 2024 07:32AM)
SINGAPORE: What would you do if you had a serious illness like stage four cancer and were told that time is short?
Would you choose to go for treatment, which in the best-case scenario could extend your life by a few months? Or would you forgo treatment and make the most of whatever time you have left?
It’s an impossible decision to make, even more so when one is young with much to live for, or has young children, or when there’s external pressure from family to continue treatment. Unfortunately, such decisions are something many seriously ill patients face.
Like many with serious illnesses, our patient John* had dedicated much of his time to seeking treatments in the hope of living longer. He was young, in his late 30s, with stage four cancer and on his third line of chemotherapy.
During one of our conversations with him, he said: “I would like to fulfil my promise to my daughter to take her to Mandai Bird Paradise. I would also like to create some artwork with her, for memory’s sake.”
When asked what was holding him back, he gave a wry smile and remained silent.
He had already spent more than three years battling cancer. But with a wife and a four-year-old daughter, every extra day he was alive was an extra day with them. To him, this was meaningful - even if the trade-offs were multiple tubes in his body, frequent appointments for tests and side effects from his treatments. With treatment, at best, he might get another four months. Without, it was anybody’s guess how long he had.
LIVING FOR TREATMENT OR TREATING TO LIVE?
When it comes to serious illnesses, many people end up living for their treatments - such that they sometimes forget to focus on making time for things that matter, like creating memories with loved ones or ticking off items from a bucket list. This concept of time toxicity (time spent in coordinating care, frequent visits to a healthcare facility, seeking urgent care for side effects, hospitalisation, and follow-up tests) is not something many seriously ill patients are aware of.Yet, patients living with life-limiting serious illnesses - such as end-stage organ failure, severe frailty or cancer - and their families and clinicians have tough decisions to make. Decisions that cannot be based purely on clinical evidence.
Decisions that demand a person-centered approach to treatment and care recommendations.
This is where serious illness conversations (SICs) come in. These are not limited to end-of-life conversations.
These are honest conversations about the treatment or care options that best align with a patient’s priorities, his or her worries and the various trade-offs one has to weigh when considering options. These are conversations about how they can live with realistic hope and purpose, even in the face of life-limiting illness. Importantly, they provide an opportunity for patients to reflect on what is important to them, so that they do not have any regrets.
It was during such a conversation that our patient mentioned his two wishes. After some discussion, he decided not to wait for the treatment to work before fulfilling his promise to his daughter. With the help of volunteers and creative therapists, he spent a memorable day at the bird park with his family and co-created art pieces with his daughter, leaving behind a legacy for her.
He died a few months ago.
Admittedly, this patient had the conversation late in his illness journey. Ideally, such conversations are held early and are revisited throughout the illness journey, as prognosis and priorities can change. They help guide decision making for the present and prepares patients for future healthcare situations.
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TOUGH CONVERSATIONS
However, these conversations are tough to have and far too infrequent. Studies have shown that barriers for clinicians include a lack of knowledge and training, time constraints and fear of making patients lose hope.Yet, in settings where SIC programmes have been implemented, the frequency and quality of conversations have improved, patients experience less anxiety and depression, and, in some instances, healthcare costs have been reduced as patients steer away from burdensome treatments. Patients value these conversations and if done well, such discussions do not take away hope.
For SIC programmes to succeed, several steps are required. First, clinicians must be trained in how to conduct such conversations, using a framework of patient-tested language. From our experience teaching SIC courses at the Lien Centre for Palliative Care (LCPC) at Duke-NUS, clinicians who have undergone training have reported feeling empowered and less anxious to carry out these conversations.
Second, leadership buy-in to protect clinician time to carry out these conversations is critical. Using a whole-of-team approach can also reduce time constraints and ensure that responsibility for such conversations is shared across teams.
Third, we need a single IT enabled platform that draws SIC documentation directly from the electronic records of various healthcare institutions. This will reduce duplication and ensure that the patients’ preferences are met regardless of where they seek care.
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Finally, empowering patients with resources to prepare for SICs can increase their readiness for such talks. As most SIC materials currently available were developed for populations in Western countries, they should be evaluated to ensure that the content and language is culturally relevant and acceptable in our local population. To this end, LCPC has adapted and tested a local English version among patients here and intend to translate and test Mandarin and Malay versions in due course.
Serious illness conversations are about how we want to live our life in the face of existential threat. Such conversations do not take away hope but recognise the dignity and humanity of the patient living with the illness. Surely as a society, we will want this for ourselves and our loved ones.
*Pseudonyms were used in this commentary.
Associate Professor Alethea Yee and Assistant Professors Shirlyn Neo and Gillian Phua are from the Lien Centre for Palliative Care at Duke-NUS Medical School. They are specialists at the Division of Supportive and Palliative Care, National Cancer Centre Singapore.
