Helping patients go gently into the night
Marriage was on the cards for a young man when he found out he had a type of advanced cancer that was incurable. He entered palliative care, where he and his fiancEe received emotional support to cope with his diagnosis. The couple held a sad but heart-warming wedding a few weeks before he died.
Another case: a terminally ill cancer patient was reluctant to be transferred to the palliative care unit. A divorcee, she worried that no one would take care of her three estranged teenage daughters after she was gone. With support and counselling, she overcame her anxieties, and her daughters even reconciled with one another.
A third case: a 17-year-old boy with liver cancer complained of constant pain despite large amounts of opiates. After exploration and counselling, the palliative care team discovered that the source of his pain was not purely physical and was linked to his parents' divorce. The boy was yearning to see his father before he died. After some persuasion, the boy's mother allowed the father access to the boy. The boy's pain and need for opiates decreased dramatically with his father's visits.
These stories are examples of how palliative care can improve a patient's life. Palliative care is an umbrella term referring to specialised area of health care that focuses on relieving and preventing the suffering of patients. It takes in the area of hospice care towards the end of a terminal illness. The focus is then on easing the pain and stress of a terminal illness, while improving the quality of life for both the patient and his or her family.
Conditions that may require palliative and hospice care include cancer, heart disease, kidney failure and Alzheimer's disease. Doctors, nurses, clinical psychologists, physiotherapists, occupational therapists, spiritual workers and volunteer 'friends' typically make up a palliative care or hospice team.
Aside from relieving pain and suffering in the final days, palliative care provides the terminally ill with psychological and spiritual support to address feelings such as fear and loneliness, and concern about the well-being of family and friends after they have gone. Such support has tangible benefits. A 2010 study published in the New England Journal of Medicine found that cancer patients who received early palliative care enjoyed both better quality and quantity of life. They were also more likely to get the chance to express their preferences for their end-of-life care.
Culture, however, influences attitudes toward death. In Chinese culture, death and end-of-life issues are traditionally considered taboo. However, palliative care workers have found that many terminally ill Chinese patients are not afraid of death or talking about it. What they worry about is the process of dying - whether they will suffer any pain, lose their dignity or be subjected to unnecessary medical interventions. They also do not want to be a burden to their family.
These feelings of anxiety are compounded by the tendency of many Chinese families to withhold bad news from the patient, for fear of demoralising or depressing them. While their intentions are good, patients must be made aware of their prognoses eventually. Family members may not know how to break the news delicately, or can inadvertently cause more distress by hiding the truth, which may erode the patient's trust. A palliative care or hospice team can help gently break the news when requested by the patient, while realigning expectations and hope.
Palliative care marries medicine with compassion. It enhances communication so that there is no collusion, but truth and honesty. This enables patients and their family members to be open about their emotions, opinions and preferences, helping to make the process of dying more peaceful, dignified and graceful.
In lending themselves to such a process, family members often experience personal growth even as their loved one passes away.
As Abraham Lincoln said: 'In the end, it's not the years in your life that count; it's the life in your years.'
Dr Raymond S. K. Lo is a geriatrics and palliative medicine specialist, and president of the Federation of Medical Societies of Hong Kong