Patients, families need to discuss dying and care options, say experts
THE report outlining what is to become Singapore’s national strategy to develop palliative care has called for greater awareness and understanding of end-of-life health care. Health-care professionals have identified the lack of open discussion on death, dying and palliative-care issues as a key challenge to overcome. By not talking about these issues, patients and their families close off possible health-care options. The report, titled National Strategy For Palliative Care, said: “Patients or family members may carry the misconception that palliative care is meant only for patients at the end of their life and associate it with giving up hope and treatment, thereby refusing appropriate care.” This is where advance care planning comes in.
With this, a patient decides ahead of time how he would want to be cared for when he is no longer capable of making decisions. The report suggested that a “consistent set of messages” on advance care planning be developed and spread so it is not misconstrued as euthanasia, for example. A steering committee should be set up with partners from hospitals to ensure health-care professionals have a basic understanding of advance care planning and tie-ups should also be forged with grassroots and religious leaders, who can spread the message of its benefits.
The seeds of this public education drive were sown with the launch of a community programme by the Singapore Hospice Council (SHC) last October. It will involve road shows, public talks and possibly a video or TV campaign. SHC chairman R. Akhileswaran said death is such a deeply held taboo that, with Chinese New Year coming up, the families of many patients are declining home visits from palliative-care nurses or doctors for fear of attracting “bad luck”. He added: “There’s nothing wrong. It’s our way of life. But how do we get over this fear so that those who need these services are not denied it?”
]A survey the Lien Foundation did last September found that families and caregivers play a big role in looking after patients with life-limiting illnesses, so they are the ones who need information and training on how to provide care. Caregivers also need emotional support, short breaks from the work of caring for a patient and bereavement support. The report said bereavement support should be given to a family both before and after a patient’s death – family members may even need counselling or psychiatric services.
Dr Jeremy Lim, the executive director of the Lien Centre for Palliative Care, which put together the report, identified greater public awareness as the most critical issue that the palliative-care scene here needs to look into. Associate Professor Cynthia Goh, the vice-chairman of the workgroup that developed the report, agreed. She said: “If the public asks, ‘Why isn’t it that everyone who needs palliative care gets it?’ I think that will galvanise the Government into doing something.” Dr Lim added that action will beget a “virtuous cycle” when the public becomes aware and starts to ask for more and better palliative-care services.