End-of-life care & the challenges


Ageless Voice interviewed Dr Ng Wai Chong, medical director for Hua Mei Centre for Successful Ageing (an initiative of the Tsao Foundation) on the end-of-life care programme by Hua Mei Mobile Clinic, which was piloted in 2009:

 

Can you tell me more about the three-year programme on palliative care piloted by Tsao Foundation’s Hua Mei Mobile Clinic? What year did it start and what were its goals?

This programme was partly funded by Tote Board Community Healthcare Fund, administered by the Ministry of Health and Agency for Integrated Care. It spanned three years from October 1, 2010 to September 30, 2012.

The first year was the phase whereby the Clinic developed its clinicians in palliative care expertise through internal training and external understudy and clinical attachment. The Clinic also codified its operations to better cater to the needs of those elders who are near the end-of-life care capacity. The programme was actually in operation only in the second and the third year.

The ultimate goal of the Hua Mei Mobile Clinic system of care is to instill a sense of comfort and peace in old age, whereby the older persons served by the Clinic enjoy optimal health, sense of security and dignity while living in their own homes surrounded by loved ones and other natural supports, like neighbours and friends. When the time comes, the older persons and the Clinic as a care-partner, may endeavour a good death, which usually means dying at home, without having to lose the sense of comfort and peace while doing so.

 

Can you share some interesting survey results including that a large majority surveyed wanted to die at home?

Over the two years when the programme was in operation, there were 55 patients admitted and served under it, as they were assessed to be near the end-of-life. The average age was 87.4 years, ranging from 69 to 99 years. As expected, the majority, 80 percent were totally dependent in their basic activities of daily living.

All of them have multiple co-morbidities, typical of frail elders in this age group. The commonest diagnoses were dementia (76 percent), stroke disease (60 percent) and hypertension (49 percent). Among the diseases that usually render a person eligible for the traditional hospice or palliative care programmes if serious enough, nine percent had cancer, 18 percent had chronic renal failure, five percent had chronic obstructive pulmonary disease and 11 percent had congestive cardiac failure. One implication of this is that most of these frail elders will not qualify for hospice admission.

The Clinic had facilitated and documented advance care planning for the majority – 54 out of 55 of them or their families for those not able to communicate their preferences. Among these 54 elders and their immediate family, the majority or 84 percent indicated that they preferred to die at home. Under the programme, the majority was able to die at the place of their choice (78 percent died at home, while 22 percent died in a hospital).

Among these 54 elders and their immediate families, 53.7 percent actively preferred not to have tube feeding. Under the programme, the majority (58 percent) did not receive tube feeding. Two out of the 55 patients had nasogastric tube inserted against their wishes, as per documented in their Advance Directive, as they were critically-ill in the hospital before their passing.

There were 36 deaths within the programme over the two years. The majority did not experience pain, however three did. Majority had mild symptoms such as drowsiness, loss of appetite and fever. Among the terminal symptoms, shortness of breath occurred in 22 out of the 36 who died. These were managed and controlled with timely medications.

A survey was conducted among the families of those who passed on under the programme. The 76 percent of the families interviewed felt that their loved ones had died a good death. There were no families who perceived the death as a bad one, under the programme. Two families indicated they were ‘not sure’ and three elders had no family when they died.

 

Cost is an issue with home care. How much would you say it would take to care for a typical patient battling several illnesses and who has only six months to live?

I’m not able to estimate as cost of care is a complex subject. It is not just the cost of formal services like ours, with doctors, nurses and social workers. Many families need to engage foreign domestic helpers to care for their loved ones. Some even have to stop work to care for their parents, not to mention the cost of nursing care consumables and medications. For those elders under this programme who are critically-ill, the Clinic does not charge any fees for visits by doctors, nurses and social workers. The family only needs to buy medicines, which would have been cut down by our doctors once their diseases have become terminal.

However, compared with the anguish and financial strain on admission to hospitals or nursing homes, and the benefit of dying at home with relative peace and comfort, the cost is worth it.

 

I understand the pilot programme highlighted the importance of agency collaborations. Can you explain further on this?

To care for a frail older person in the community can be complex. Aside from having to organise a sustainable informal care system, service providers need to share a similar vision and care goal for the elder, and work closely together based on a coordinated set of care plan.

The Hua Mei Mobile Clinic CANNOT support older persons to age-in-place without the contributions of the family members, the informal community resources such as neighbours and businesses in the neighbourhoods, other community-based services such as home-help and meals-on-wheels, the colleagues working in the restructured hospitals and governmental and regional agencies such as the CDCs, HDB and Town Councils.

 

Your programme also focused on caregiver support. Can you elaborate on the importance of this?

I saw a French language movie titled “Amour”, directed by Michael Haneke. It was a poignant dramatisation of the experience of an elderly couple caring for each other when the wife suffered repeated strokes. Catch it on DVD if you can as you may have a glimpse of how important caring for the caregiver is.

In order to take care of a severely disabled older person who has multiple medical, psychosocial, spiritual, rehabilitation and nursing needs, we have invested in, built and maintained facilities, trained and employed hundreds of people ranging from the highly-skilled doctors, therapists, chefs, engineers, managers and nurses to the less skilled cleaners, health attendants and technicians, working on shift 24 hours seven days a week. Now, imagine this older person is living at home and there is an expectation, rightly or wrongly, of the same standard of care. Don’t you think the burden on the caregiver can be very big?

 

With the growing ageing population, do you think we have enough trained palliative care nurses? How should we deal with the shortfall, if any?

With a growing ageing population, no matter how well we educate the public on healthy living and disease prevention, we have to expect an increase number of people with physical and mental disabilities that are associated with ageing. If the data of our pilot programme is reflective of the general population, then we can expect that many of these disabled elders would prefer to live at home, and die at home when the time comes.

We should train more nurses to deliver care in the community. They should be broad-based in their training. Comprehensive assessment, palliative care, teamwork, communication and care management are all relevant and important skill-sets.

Tsao Foundation is currently running a Community Gerontological Nursing Course with the American ELNEC training woven into it. ELNEC stands for End-of-Life Nursing Education Consortium, a national education initiative to improve palliative care in the US.

However, training nurses are not enough. To support disabled elders at home, we need to cultivate and support a sustainable community care system – supporting family-caregivers when they have the intention to provide care, and coordinating for formal community services if there is no available informal caregivers. This means a community-based care management system, a more responsive primary healthcare service and a sustainable financial model are all needed.

 

With the pilot programme ending, what are the next steps for the Clinic?

We will continue this programme within the Mobile Clinic.

 

(** PICTURE CREDIT: AWWA Centre for Caregivers)

 


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