Methodist Welfare Services’ Dr Andy Lee debunks the taboos surrounding death and palliative care.
With death being a taboo subject in Singapore, conversations about palliative care for the terminally ill tend to remain off-limits until they are absolutely necessary. This makes discussing home-based care even more sensitive and challenging.
Getting around deep misconceptions and myths about palliative care involves addressing a patient and his family’s concerns individually and tactfully, instead of bombarding them with medical facts and figures, says MWS Home Hospice acting head Dr Andy Lee.
“It is important to always explore the underlying ideas and previous experiences that may have given shape to their current concerns. It is often a knee-jerk response to react to the families’ concerns by giving them scientific facts and numbers,” Dr Lee says.
“But, this approach may not work because there may be deep-seated beliefs that have been built up over many years based on what they have seen or heard from trusted friends or family members. Unless we address these erroneous beliefs and misconceptions, it may well be a one-sided provision of medical jargon that does little to engage and educate our patients.”
Dr Lee debunks seven common misconceptions his team encounters:
1. A hospice is a medical facility to care for patients at the end of their lives.
Contrary to popular belief, hospice is not just a medical facility for patients to receive care at the final stage of their lives. The term “hospice” actually refers to a concept of care that focuses on improving the quality of life for terminally-ill patients and their loved ones. This care can be delivered at home or in long-term care facilities such as nursing homes, or inpatient hospices.
2. Palliative care only starts when the patient is dying, or when all other curative treatments have been exhausted.
Palliative care is appropriate at any stage of a serious medical condition. A patient can still receive curative treatment while undergoing palliative care. The aim of palliative care is to provide a better quality of life for patients by helping them with their physical, psychological and spiritual needs. In fact, starting palliative care as early as possible after diagnosis has proven to be beneficial to patients in offering a higher quality of life.
3. Palliative home care is not useful because nothing much can be done at home.
Although there are limitations to the investigative work that can be done at home, palliative home care is still beneficial for patients, especially those who are home-bound and are unable to travel to the hospital for their regular follow-ups. With good clinicians tending to patients, diagnosis and medication can still be administered effectively.
4. The end is near because the doctor and nurses are coming to my home.
Many patients and their families lose all hope and fighting spirit at the sight of doctors and nurses visiting them at their homes. They assume this means that the patients can no longer receive treatment and are merely waiting out their days. Sadly, this has resulted in the rejection of home care services for some patients. In fact, on many occasions, the support from home care doctors and nurses help to allay a lot of anxieties of home-bound patients, especially if they are no longer able to visit the hospital for their usual follow-ups. Many of our patients actually look forward to the visits even when they are well because of the companionship and camaraderie.
5. The administering of morphine should only be started when the patient is about to pass on and the drug will make the patient drowsy.
Morphine belongs to the opioid class of medications and is very effective in the management of severe pain and breathlessness. But because of the bad press related to diamorphine (heroin), many patients and their family members are very hesitant about morphine. Morphine, when used at the correct dose, can help to relieve pain and breathlessness effectively without causing undue drowsiness and side effects.
6. A patient may get addicted to pain medications, which will lose effectiveness after a while.
Controlling symptoms as a condition progresses often involves increasing doses of pain medications. For example, a growing tumour may cause increasing pain and require much higher doses of medications as the condition worsens. This does not mean the patient is addicted to the medication, or that the medication is no longer working.
7. An unconscious patient may feel hungry because he cannot eat.
This misconception is especially important in the local context, as our cultures view feeding our loved ones and having meals together as acts of love. There is often a lot of guilt within the family as they watch their loved ones deteriorate with decreasing oral intake. As the patient gets sicker, the organs start to shut down and are no longer able to process and regulate food and fluids. As such, patient loses his appetite and do not experience hunger pangs. In fact, force feeding fluids or food when the patient is unconscious may cause unwanted side effects, such as choking and accumulation of fluid in the peripheries or even lungs.