Wednesday, 12 April 2017

Palliative care for dementia patients at Assisi Hospice

At Assisi Hospice's new ward, they can live out their last days in comfort and dignity
By Janice Tai, The Straits Times, 11 Apr 2017

Madam Liow Ah Tay, 87, has struggled with dementia for the last decade. Now as her health declines further, she had been admitted into the first hospice ward here for dementia patients.

In 2007, the former vegetable seller started displaying strange behaviour. At 3am every day, she would wake up to prepare to go to the market to open her stall, even though by then she had long retired from the trade.

Her children refused to let her go out at that hour and she would force open the door with a pair of scissors or a knife. They discovered then that she had mild dementia.

Five years later, her condition deteriorated further. She accused people of stealing her things. Whenever her children - those who did not live with her - went to visit her, she treated them as guests and entertained them.

Today, Madam Liow has advanced dementia - the feisty woman has become quiet and no longer recognises her daughters.

On some days, she even has trouble sitting up.

Her two daughters who look after her are relieved that she is among the pioneer batch of patients to be cared for in the first hospice ward here dedicated to people with advanced dementia. She was admitted in January.

Dr Shirlynn Ho from Assisi Hospice said not many people know that dementia does kill and that palliative care could be needed.

"People don't usually recognise dementia as a terminal illness that one can die from because it is a long and progressive disease," she said.

The hospice opened a dementia ward which has a capacity of 16 beds in January. It provides palliative care that specially caters to people with severe dementia so that they can spend their last days in comfort and dignity.

The ward will be officially launched tomorrow.

Temasek Foundation Cares donated $1.6 million to support the programme. Patients pay $295 a day, before subsidies. Ten beds have already been taken.

More people are likely to need such a service, given the country's galloping rates of dementia. The disease affects about 40,000 people in Singapore, and the number is expected to double by 2030.

Prior to the setting up of this ward, those with advanced dementia mostly live and die at home or in nursing homes.

Even though the number of dementia patients is soaring, one reason why hospices globally do not support enough of them is that it is particularly challenging for doctors to determine with much precision how long a person with advanced dementia can expect to live.

In the United States, for instance, hospices admit only people who have six months or less to live. Dementia patients are under-enrolled in hospice programmes there because doctors cannot identify those likely to die within that time span.

The programme at Assisi Hospice takes in dementia patients with a prognosis of three months - meaning those with advanced dementia or those with mild to moderate dementia and other life-limiting diseases that give them that prognosis.

"Dementia shortens life expectancy, but it is very difficult to know how long they will live. As the end of life approaches, they experience symptoms similar to those of persons dying of more commonly recognised terminal illnesses such as cancer," said Dr Ho.

Dementia is an illness which affects the brain. Brain cells die at a faster rate than normal and those with advanced dementia usually have memory loss and lose the ability to shower, walk, talk or even eat. They become frail, bed-bound and prone to infections.

They die when they get a major infection such as pneumonia or when their body systems shut down.

The dementia programme at Assisi provides the usual palliative care of pain and symptom relief.

Staff also try to understand the patient's past and needs in order to address challenging behaviour.

For instance, Madam Liow used to insist on entering the kitchen at 6pm every day, wanting to cook dinner for her children. So nurses at the hospice gave her bowls and plates to play with safely instead.

As dementia patients tend to wander around and get lost, the ward doors are locked automatically. Slim grilles are fitted at the balcony to ensure safety but allow for unobstructed views.

Said Ms Lee Poh Peng, 48, Madam Liow's daughter: "She used to be very agitated but she is much calmer and at peace now. We still worry for her but we worry less now."

A home away from home for children who are critically ill

By Abigail Ng WY, The Straits Times, 13 Apr 2017

Critically ill children have, for the first time, a place they can stay to be cared for under a new programme being piloted at Assisi Hospice.

While palliative care for children at home is available from other organisations like HCA Hospice Care, this is the first programme to offer such care in a facility.

Children under the age of 21 with life-limiting illnesses such as cancer, blood disorders or organ failure may be admitted into the programme. The paediatric ward also provides respite care.

Supported by Temasek Foundation Cares, the programme was launched by Senior Minister of State for Health Amy Khor yesterday. A programme for patients with advanced dementia was also launched.

Assisi Hospice's head of medical services Shirlynn Ho said that the needs of children differ from those of adults.

"Children are still growing, learning and playing," she said. "We want to provide a childhood or adolescence for them."

Before the programme and specialised ward at Assisi Hospice became available, families had no in-between option. "For example, when children don't need that intensive level of care (from hospitals), yet cannot manage the nursing care at home, " she explained.

Hospice care also removes limitations like visiting hours. "This programme helps to alleviate the stress for caregivers, so they can focus on spending quality time with their family members," she added.

This model of care will be piloted for three years, with $1.1 million from Temasek Foundation Cares.

The paediatric ward has a playroom, playground and space for family members to stay overnight. It also has five single-bed rooms, one of which is occupied at the moment.

Patient Kelly Lim, 17, was admitted to the hospice last month following a seizure and infection.

She has Gaucher disease, a metabolic disease characterised by progressive brain degeneration.

Assisi Hospice clinical director Patricia Neo said Kelly's mother Sally Lim had been experiencing caregiver fatigue and burnout from a lack of adequate rest.

"A paediatric ward like this provides Kelly's mum with much- needed respite in this care journey," she said. It costs $295 a day, but government subsidies can cover up to 75 per cent of the fees.

Describing the ward as well-decorated and child-friendly, with space for family members, Dr Khor said: "It allows them (the children) to have a good quality of care and good quality of life even in their last days."


Beer, durian, cigarettes? All fine for the terminally ill
Hospices are now more empathetic to their wishes even when they seem unconventional
By Janice Tai, The Straits Times, 15 May 2017

Nurses find Mr Klassen Alaric Philip, 80, to be a quiet man.

The only times he shows some personality would be when he refuses to take his medication.

Otherwise, the bachelor with schizophrenia and lung cancer is mostly in a confused and depressed state of mind.

Last Tuesday, however, he perked up when he spotted beer in the Treats Trolley that volunteers push around the wards of Assisi hospice. The trolley contained snacks or drinks meant for patients and their caregivers to indulge in.

The volunteers asked if he preferred Sapporo or Heineken beer.

Mr Klassen took his time before deciding on Heineken.

In less than five minutes, he gulped down three plastic cups of cold beer. The yellow liquid went down so fast, he coughed slightly.

"Slow down, when was the last time you drank beer?" volunteer Pauline Teo, 70, asked him jokingly.

He told her it was in the 1950s on a plane in Vietnam when he was a soldier with the US Army. Then he began reminiscing about his days in the army, rare for a man who usually does not even make eye contact.

Last Tuesday was the first time that Assisi introduced alcohol on its trolley, following several requests from patients.

Said Ms Choo Shiu Ling, Assisi's chief executive: "Patients' wish for a specific type of treat such as cigarettes and alcoholic drinks will be granted as long as it is not excessive in nature or detrimental to their current condition. We grant requests that can be unconventional but meaningful for patients."

Medical institutions worldwide, including those in Singapore, are slowly rethinking what quality of life really means, especially when it comes to patients who are dying. Honouring the personhood and wishes of these terminally ill patients can take precedence over rules or convention.

Last month, a Danish hospital broke protocol to grant 75-year-old Carsten Hansen his last wishes. The nurses at Aarhus University Hospital defied regulations that stipulated no smoking on the hospital's grounds and wheeled Hansen out to a balcony where he smoked a Green LA cigarette and drank a glass of chilled white wine while watching the sunset with his family. He died a few days later.

Dover Park Hospice has also been flexible about offering alcohol to patients.

The last time a patient requested alcohol was years ago. Then, volunteers of its "Happy Hour" team obtained some hard liquor for the patient to drink with his son, as that was what the pair used to do weekly when the father was still healthy.

"It is not so much about bending the rules, but rather listening to the needs of patients," said a Dover spokesman.

Cigarettes are a previously forbidden item that institutions are increasingly giving the green light to.

St Andrew's Community Hospital, which started operating a palliative ward two years ago, allows family members to take patients to an open area for a smoke if they are not on oxygenators.

Patients can also eat "previously forbidden food" such as durians and char kway teow. They can have their own pets brought into the ward for a visit too.

Said a spokesman: "The team tailors care guidelines accordingly to take into account the change in focus from disease prevention treatment to one of comfort and improvement of quality of life.

"Rules and guidelines are meant to protect and not to restrict a patient's freedom. When it no longer serves its purpose, to insist on a restriction reflects an absence of empathy."

Assisi residents can also head out to the garden for a smoke, upon getting the doctor's approval. One patient was even allowed to take a few puffs of smoke in his room because he could not be wheeled out. He died one or two hours after his wish for a cigarette was granted.

However, meeting the needs of patients sometimes goes beyond closing one eye on consuming certain forbidden food.

Dover Park hospice once had a patient who used to play the harmonica every morning to park users and he missed the feeling of performing for an audience.

However, he had a prolapsed stoma, meaning a protruding bowel, and any exertion of blowing on the harmonica could have aggravated his condition.

Given the risk, the hospice team arranged for him to hold a mini concert for other patients and their family members but negotiated with him on the number of pieces he could perform and inserted a singalong segment halfway through so that he could take a break while the clinicians assessed his condition.

It was a decision that the patient clearly did not regret making.

Said the spokesman from Dover: "He was talking about the experience for the rest of his days with us until his demise and the stoma was the least of his concerns."

For Mr Klassan, how much happiness can a simple can of beer bring?

Enough for him to start debating with this reporter on the merits of the various brands of beer. "I enjoy Heineken, it has the same light taste as Carlsberg," he said. "ABC and Tiger are too strong."

No comments:

Post a Comment