“Near the end of life, patients are not the only ones who have to confront the fear of death. Their family members also need to cope with the grief of losing someone they love. Apart from providing relief from pain for the patients, we also reach out to their families and offer psychosocial and spiritual support,” Leung explained. “For some of the families we are worried about, we even make calls on the first death anniversary of their loved ones, making sure they are fine.”
More than 10 years ago, Leung established SASHCC, Hong Kong’s first self-financing free-standing hospice . Witnessing patients spending the rest of their lives in public hospitals’ overcrowded medical wards, Leung was devoted to providing end-of-life patients an option outside hospitals.
“They have only simple wishes. Instead of seeing their families within specific visiting hours, they want to make use of their remaining time to be with their family members, in a private and peaceful environment,” Leung described.
Recalling more than 30 years ago when he dived into the expansion of Haven of Hope Hospital, Leung is grateful that more patients, especially the young-old, are aware of and accept the concept of palliative care nowadays.
However, with over 40,000 deaths per year and only a total of roughly 450 beds offering palliative and hospice care services to patients in Hong Kong, there remains a long journey for the development of palliative care in the city. In this exclusive interview, Leung shared with MIMS his perspectives on what can be done to promote the concept of palliative care to the general public and healthcare professionals.
A national policy framework for palliative care in Hong KongIn the latest 2015 Quality of Death Index released by The Economist Intelligence Unit, Hong Kong ranked 22nd in the world and the fifth in Asia. Topping the list was the UK, which is considered a pioneer in the field of palliative and hospice care.
Dame Cicely Saunders, who was trained as a nurse, a medical social worker and finally as a physician, is recognised as the founder of the modern hospice movement in the country when she founded the St Christopher’s Hospice in London, the first modern hospice in the world.
“Although Hong Kong falls behind Taiwan, Singapore, Japan and South Korea in the index, it does not mean the standard of healthcare professionals in Hong Kong is inferior to these countries,” said Leung. “What we are lacking is a national policy framework for palliative care.”
There are several factors the government needs to take into consideration when planning this policy framework. Manpower is one of the factors. Compared with the UK where palliative care became a full specialty of medicine in 1989, it was not until 1998 when the Hong Kong College of Physicians established Palliative Medicine as a specialty. Currently, Hong Kong has only 21 Palliative Medicine specialists, which is in stark contrast with the number of deaths in the city.
Money is also a concern. “Even though we operate on a not-for-profit, self-financing model, and we provide 12 “Relief & Charity” beds for free to the underprivileged and needy patients, there are patients out there who cannot afford the full cost of palliative care,” said Leung.
As many of the insurance plans nowadays do not cover palliative care, Leung hoped the government can take the initiative to effect change in its Voluntary Health Insurance Scheme (VHIS).
Community involvement key to advance care planningAnother factor – probably the most important one – is that the government needs to consider how to increase the prevalence of advance care planning by enhancing community involvement.
Leung suggested one should begin learning the values of life during childhood and he suggested primary schools offer life and death education to students. Additionally, he urged for more palliative care training in medical schools, allowing students to understand the physical and psychological needs of end-of-life patients.
Aside from Palliative Medicine specialists, Oncologists and Geriatricians, who deal with death more often, Leung pointed out that doctors generally feel less comfortable to discuss issues in advance care planning with their patients. “Indeed, patients welcome the discussion on advance care planning. They feel respected,” said Leung.
Palliative care can be provided along with curative treatmentLeung emphasized that healthcare professionals should at least be aware of palliative care as a treatment option.
“When a patient asks you what treatment options he/she has besides chemotherapy and radiation therapy , at least you can advise the patient on the availability of palliative care and educate the patient on what palliative care is. Subsequently, you can refer him/her to some suitable places to receive palliative care,” explained Leung.
“The patient and his/her family members may become emotional when they make the decision, throwing questions to you such as ‘Am I giving up the life of my loved one?’. In this case, you may need to work with nurses and social workers to offer psychological and spiritual support,” he added.
While many may perceive palliative care as a treatment option for end-of-life patients only, and hence, refer patients at their very late stages, Leung clarified that palliative care can actually be provided along with curative treatment.
“It can be a seamless process for curative treatment and palliative care to be provided along the disease trajectory from the point of diagnosis to the point of death. While providing invasive treatment to cure the disease, we also aim to take care of the patient as a person, upholding his/her quality of life by relieving his/her pain and providing psychological support,” Leung explained.
Establishing a legal status for Advance DirectivesOne of the crucial components in the concept of advance care planning is Advance Directives – a living will drafted by patients to indicate what actions should be taken for their health.
“Last year, there was a son from Netherland who accompanied his dad to our hospital. Before admission, the son showed us the Advance Directives signed by his dad and lawyer. He asked us if we are willing to respect the decision his dad has made, such as abandoning the use of tube feeding and breathing machine,” described Leung.
In 2006, after a consultation with the public, healthcare organizations and medical societies, the Law Reform Commission made the decision to recommend the promotion of Advance Directives without drafting new legislation. Up till today, the legal status of Advance Directives is still not yet established.
“If the doctor has not well communicated with the patient’s family before he follows the Advance Directives, his/her family might object the patient’s decision in receiving palliative care afterwards.
“This is an embarrassing situation for both the doctor and the patient. Even when the majority of family members agree with the patient’s decision, one of them might dominate the opinions of others. Eventually, the doctor might need to go against the patient’s intention if he/she cannot withstand the pressure exerted by the family member,” Leung explained. “In this case, establishing a legal status for Advance Directives can ensure doctors follow the patients’ intention.”
Still, Leung reminded one should focus on promoting advance care planning, which is a process, rather than Advance Directives, which is merely a legal document. “If you simply give your parents Advance Directives to sign without discussing with them their advance care planning, I’m sure they would beat you up!” he joked.
“To cure sometimes, to relieve often, to comfort always”Apart from recommendations for the development of palliative care in Hong Kong, Leung also has some advice to healthcare professionals who take care of chronically ill or end-of-life patients. Specifically, he reminded there is one sentence that healthcare professionals should not say to their patients: “Sorry, I cannot help you anymore.”
“When the patient is already suffering from intense pain, they would really commit suicide if they lose hope,” Leung pointed out.
“Instead of saying this to the patient, try to say: ‘We cannot cure your cancer. However, we can continue to care for you as a person. We can relieve your physical symptoms, supporting you and walk with you till the very end.’ Yes, it is very unlikely we can heal the patient. But we can at least let patients to know that their lives do matter to us,” he emphasised.
Understanding healthcare professionals are occupied and busy all the time, Leung commented, “Just try our best. The patients already don’t have many days left in their lives. What we are trying to do is to add life to their remaining days.”
“To cure sometimes, to relieve often, to comfort always.” This quote from Dr Edward Trudeau, founder of a tuberculosis sanatorium, also reflects Leung’s value over the years. MIMS
Palliative and hospice care in Hong Kong: The struggle between longevity and quality of life
End-of-life care: Knowing the difference between saving lives and postponing death
When the final journey begins: of challenges
Healthcare professional shortages in Hong Kong - The many reasons and controversies - Part 1