For patients who are terminally ill, palliative care by a hospice can be like a light in the darkness – a service provided to ensure they live well up till the end of their life.
“Unfortunately, many aren’t aware of what a hospice is or what we do. Many also don’t realise that a hospice’s services are provided free-of-charge, or that hospices are funded solely through public donations,” says Kasih Hospice general manager Catherine Ooi.
A hospice provides end-of life care, focusing on pain management – whether physical or psychosocial (emotional) – of a terminally ill patient. It is a branch of palliative care, which according to the World Health Organisation (WHO), is a human right.
WHO states that palliative care is “a crucial part of integrated, people-centred health services, to relieve their suffering, be it physical, psychological, social, or spiritual. According to WHO, 78% of people in need of palliative care live in low and middle-income countries and fewer than 10% of patients who need palliative care in these countries receive it.
In Malaysia, there are currently 30 hospices (at least one in each state, except Perlis) and 26 are registered with the Malaysian Hospice Council, an umbrella organisation for hospices that seeks to advocate and enable access to palliative care for all in need in the country.
“Many of these hospices, like Kasih Hospice, are badly affected by the pandemic. During the movement control order (MCO) and conditional MCO, physical events to raise funds for hospices are put on hold. There are also additional costs incurred from purchasing PPE for hospice staff,” says Ooi, who is also vice-chairperson of the council.
“But funds are still required for the medicine, equipment (such as hospital beds and wheelchairs, oxygen concentrators, etc.) that hospices require in order to operate,” she says.
Receiving the care she needs
To breast cancer patient Susan (not her real name), Kasih Hospice’s service is invaluable.
The 57-year-old has had breast cancer since 2014.
“The cancer first spread to my lymph nodes. In 2017, it spread to the liver and I had to have part of it removed. Then, it spread to the lungs,” she recounts.
She is now at Stage Four, which is terminal, and has been under Kasih Hospice’s care for three months since the recovery MCO.
Susan has been a volunteer with Kasih Hospice for over 11 years. So it was only natural that she turn to them when she needed palliative care herself.
“Kasih Hospice has lent me their equipment – an electric foam mattress that can rise (for the hospital/homecare electric bed), movable table, and wheelchair-potty. Their resident doctor visited me regularly during the recovery MCO and has been calling me once a week to check on my situation during the conditional MCO,” she says.
Susan, who is single and lives with her elderly parents, says that she does have fears going out during the pandemic. With two urine bags on her, it’s just not convenient for her, so it’s a relief that a hospice doctor can do house calls.
The doctor also offers basic counselling to guide patients through what they need and want to do as they approach the end of their life.
Susan reveals that facing her mortality is not a big issue for her because of her religious beliefs, so she doesn’t fear death. But it’s the physical pain that she goes through that is hard to handle.
“The hospice provides me with the medication that I need – from painkillers to even constipation medication,” she says.
But what is special about Kasih Hospice, and all other hospices in Malaysia, is that their services, equipment and medication, are free.
“Their services are very valuable, especially for someone who can’t really afford it, they come and help me - for free,” she says.
Help for families
Datuk Abdul Rahim Osman, whose daughter, Nor Rohaya, passed away in October at the age of 42, says that hospice has been a “blessing” to his family.
Nor Rohaya, who was diagnosed with Type One diabetes when she was 12 and Melas Syndrome, a degenerative disease that affects the brain, nervous system and muscles, when she was in her 20s, suffered from a stroke in 2018.
“She was partially paralysed, bedridden, needed a wheelchair to get around, and couldn’t move about without help. Her kidney function also deteriorated but she was unable to go for dialysis due to her condition,” he relates.
The specialist treating her at Hospital Universiti Kebangsaan Malaysia, Kuala Lumpur, then recommended palliative care. Since July 2020, Nor Rohaya has been under the care of Kasih Hospice.
“The care and attention given by them to palliative patients, is really excellent and exceptional. Their team of dedicated doctors, nurses and volunteers have come to the house to take care of my daughter, prescribe medication, monitor her condition, and provide therapy from July to Oct,” says Abdul Rahim.
“They didn’t have any issues visiting Nor Rohaya as it was during the recovery MCO. But when visiting, they would always follow the SOPs set by the government, and wear the PPE,” he says.
Since September, Nor Rohaya had been assisted with an oxygen apparatus and was conscious until her passing.
“For the hospice team to give so much attention and care to ensure that the patient passes on in a peaceful way is an amazing thing,” says Abdul Rahim.
“My daughter was well attended to and I’m really grateful for the service and care provided. The hospice has also helped me and my family get through the past few months. Knowing that my daughter is comfortable and her pain is alleviated is such a relief,” he adds.
He says that before his daughter needed palliative care, he has never heard of hospice or its services before.
“It was only when my daughter’s health deteriorated and the specialist recommended palliative care that we knew that such an organisation or service exists,” he says.
“I believe it’s important for members of the public to come forward to support organisations such as Kasih Hospice because they are contributing a valuable service to society and they don’t charge for it.
“For those who are less well-off financially and facing terminal illness, it can be a real blessing,” he says.
Prescribing love and care
While it’s good to live well, it’s also important to die well, says Dr Vanitha Thangaratnam.
Dr Vanitha, who has been with Kasih hospice for 12 years, admits that while she was initially skeptical about joining a hospice and dealing with the dying daily, the passion and humility of the team and their cause have inspired her.
“They were all so down-to-earth. All of them had one goal and it was to help the dying and their families,” she says.
The Petaling Jaya-based hospice has mainly cancer and non-dialysis renal failure patients. There are currently 220 patients being cared for by its team of three doctors and six nurses. There are also numerous volunteers who help out in various capacities including hospital visits and fund raising.
The hospice accept patients irrespective of age, race, nationality, socio-economic status, as long as within it’s within their area of coverage and diagnosis frame. Although the majority of their patients are adults, especially the elderly, there are also a few children. Patients come to them mainly through hospital referrals.
“While we examine their symptoms - whether they have any pain or breathlessness, and check their vitals - we also try to find out how they feel, what they want, their expectations, and how they wish things to be done for them,” she says.
This is because hospice is not just about dealing with “pain and symptom management”, but also “emotional and mental pain due to unresolved life issues such as unforgiveness, sibling rivalry, or estranged relationships”.
Dr Vanitha reveals that there are four elements when dealing with a patient’s psycho-social state before they can pass on peacefully: thanking their loved ones for what they’ve done, asking them for forgiveness, forgiving them, and saying “I love you” to them.
Additionally, over the years, they have come up with a fifth element, tell the patient “don’t worry”. For example, if a wife is passing on and worried about who will take care of her husband when she’s gone, the children can step in to say, ‘Don’t worry, we will”, says Dr Vanitha.
“Sometimes, a patient’s requests may sound unreasonable, so we try to find out why. For example, there was a deathbed patient who wanted to fly to Australia and kept asking to book flight tickets. But there is usually a logical explanation for that - such as having children there whom he misses and wants to see before he passes on,” she says.
It’s vital that any inner conflict be dealt with so that the patient can pass on peacefully without any “unresolved issues” or “unfinished busines”. Patient autonomy is very important, especially when they’re still lucid. But if the patient is no longer able to make decisions, the hospice team helps determine who the patient would want as a proxy to make decisions on their behalf.
When a patient passes on, they also do bereavement visits with the family.
“We visit the family to check how they are doing, a week after, and even up to three months after, because sometimes, the effect doesn’t set in until much later,” says Dr Vanitha, adding that this is now done by phone because of the conditional MCO.
“During the pandemic, home visits can’t be made as often so we’ve turned to doing assessments by phone/video calls. But in cases of emergency, we will still visit,” says Dr Vanitha.
Caring for the terminally ill helps you to appreciate each second of life you have left. It makes you become less self-centred, she says.
“Birth and death is a natural process. We can’t change it but whatever time there is left, we try to help the patient live a quality life, even if it’s for just two weeks,” concludes Dr Vanitha.
More info: kasihhospice.org/
To find a hospice near you: malaysianhospicecouncil.com/
The pain healers
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