Most people know how they want to live, but what about how they want to die? The Dept of Medical Social Services explains why it is a good idea to think and talk about end-of-life issues early with loved ones.
If a stroke leaves you paralysed, and then your heart stops, do you want CPR? If you develop dementia and can no longer recognise your family and friends, and cannot feed yourself, do you want a feeding tube to provide you with nutrition? What if you develop a terminal disease? What sort of treatment and care do you want to receive when you are in the last stages of illness?
For many of us, these are hypothetical questions. But they are also difficult questions about medical care that we should confront, think about and decide on at some time. Being clear while you are still able to communicate your ideas and decisions can give you control over the sort of treatment and care you want should you be struck down by a sudden and unexpected illness later.
All too often, families face anguish and pain when they have to make a decision about the right treatment – or no treatment – for their loved ones.
Do they prolong their loved one's life when he or she is likely to be bedridden, on tube-feeding and in need of round-the-clock care? If they don’t, are they giving up on someone who has spent his or her life looking after them?
Two years ago, I met a patient in the last stage of kidney failure. The kidneys play an important role in ridding the body of waste products, regulating blood pressure and the body’s fluid levels. When the organs fail, dialysis is needed. Regular dialysis can and has helped prolong the lives of many people. They might live another 20 years, or just a week. Dialysis can also be painful.
This patient in particular felt that he had lived a good life. As a retiree, he envisioned starting dialysis as subjecting himself to a life of suffering. He would rather die peacefully. Not surprisingly, his family rejected that decision as they could not understand the patient’s decision to refuse a potentially life-sustaining treatment.
I facilitated a discussion for the patient, his wife and family, and his doctors, after his case was referred to me. The meeting was intense and emotional as his family tried to change his mind. In the end, he won over his family. He would not – and did not – undergo dialysis, and was referred to palliative care services to keep him comfortable at home. Advance care planning provided a platform for this family to openly discuss the patient’s health care preferences and be involved in decision-making.
To this patient, taking away the burden of having to make the difficult decision about how to care for him at that stage of his life was a precious gift that he wanted to give his family.
As people who work in a hospital for patients with serious illnesses, we are constantly faced with the subject of end-of-life care. Our doctors often have to ask patients about their treatment choices or the extent of palliative care they want to receive. For me, the subject has been particularly relevant ever since I first became a social worker working with renal failure patients, eight years ago.
But it has only been in recent years that a formal process to address such issues began to gain currency. Known as advance care planning or ACP, this process helps patients and their families think about, discuss and document their personal health care preferences. The decisions that result from the discussions can be documented and kept with a patient’s hospital medical files. Although not recognised as a legal document, it is kept with the patient’s medical notes and can help doctors understand his or her attitude towards death and care, should the need arise.
There are three kinds of documents used in advance care planning: general advance care plans for people who are generally healthy and which ask questions like, “To you, what is living well?”, disease-specific plans for those suffering from chronic and progressive illnesses like renal, lung or heart failure, and preferred plan of care for the terminally ill.
Although the idea has gained much ground in the United States, Canada, Australia and New Zealand, advance care planning is still a new concept in Singapore. But realising its growing relevance, restructured hospitals have begun gearing up, setting up pilot programmes and training staff to be advocates and facilitators of the process. Advocates, when they sense the need for such discussions, introduce the process to the patient, while facilitators guide the patient and his family through the process.
Singapore has a diverse population with different cultural and religious needs, and death and dying are still taboo topics that aren’t easy to bring up.
Then, there is language. It is difficult enough having to go into an emotive, complex dialogue about death without having to deal with the complexities of translating concepts in English into Malay, Tamil or the different Indian and Chinese dialects!
Many who work in hospitals, like me, have seen the differences that advance care planning can make. But we know that not everyone is ready to talk about end-of-life care. Still, it is important that such a process is available so that when needed, patients and their families have an avenue and people trained to help them explore such issues.
Mr Andy Sim, Senior Medical Social Worker, Singapore General Hospital (SGH) has worked mainly with kidney failure patients since joining the hospital in 1996. He is one of the lead medical social workers spearheading the implementation of advance care planning in SGH. He is also a member of the expert panel in the ACP national office. Andy is a Certified Thanatologist (ADEC, USA) and holds a Master of Social Work from New York University (NYU), USA. He is a Fellow of the Zelda Foster Studies Program in Palliative and End-of-Life Care in NYU.
How can I make an advance care plan?
If you are an SGH patient, you can approach the Office of Integrated Care. Tel: 6576-2152 or e-mail: firstname.lastname@example.org.