When the family of SS Ng (not his real name) was asked to take Ng home, they knew his days were numbered. Diagnosed with fourth stage throat cancer, bedridden and in constant pain unless he was on strong pain relief medication, his family had no idea how to take care of him.
Apart from providing him basic care such as feeding, changing his clothes and diapers, they watched in despair as his condition deteriorated day by day. His children who were supportive at the beginning of his treatment were beginning to get weary of caring for him, while his wife was at the end of her wits as she struggled with his daily care and wondered how she could make his final journey more confortable.
When a relative gave her the telephone number of a hospice, she decided to call for help. “Two nurses came the very next day to see my husband,” Mrs Ng recalls. They cleaned him up and taught her how to better care for him.
The following week, they came with a doctor, who suggested they use a ripple mattress to prevent Ng from developing bed sores and infections. They also sent for a priest that week, who counselled him at length and helped him resolve many of his internal conflicts.
“When he passed away a few weeks later, both he and the entire family were better organised and prepared for the inevitable. I cannot thank them enough for being there for us – it was such a great help just having someone to talk to and share my deepest thoughts about his illness and how it was tearing our family apart,” shares Mrs Ng.
Palliative care, which refers to the caring of people with life-limiting illnesses such as cancer and end-stage kidney failure, has come a long way since it was first introduced in 1967 in Britain by Dame Cecily Saunders. Palliative care doctors and nurses offer medical care, often pain relief, as well as wound dressings, counselling and advice for family members, especially the primary caregiver of the patient.
In an exclusive interview with Urban Health, Tai Yun and Sharon Victoria Dabi, two experienced palliative care nurses from Assunta Hospital, reveal that most people are unaware of what palliative care really is. Here, they debunk the 5 most common myths about palliative care:
Myth #1: Terminally ill patients are always in pain.
Many family members are sceptical when told that a loved one is critically ill when he or she just seems tired or weak and are not in pain or have open wounds. “Not all patients experience pain at the final stages of their disease. Patients with end-stage organ failure, such as the liver, kidney or lungs, as well as Motor Neuron Disease, will actually be pain-free because their nerves are not functioning any more, hence they don’t feel pain,” explains Tai Yun.
Myth #2: Palliative care is only for those whose days are numbered.
There is a thin line between palliative care and hospice services, although in Malaysia these two are often inter-changeable. Hospice services are often to help those at their final stages of life and their families, whereas palliative care also overlooks patients who are undergoing treatment, such as chemotherapy for cancer. Some do recover and are discharged from palliative care, explains Sharon.
Myth #3: We can’t afford it.
Palliative care and hospice services are provided free all around the world. Yet, most people are astounded to find out that they not only get doctors and nurses coming to their home to treat the ill patient but that they can also loan expensive medical equipment such as ripple mattresses, oxygen concentrators, commodes, nebulisers, wheelchairs and more- for free. These equipment must be returned in good condition once the family no longer has need for them.
Myth #4: Patients who are very ill should avoid rich foods such as prawns, beef or duck because they may be ‘toxic’.
Everything can be taken but in moderation, says Sharon. Often, patients may start asking for certain foods and the first reaction of the caregiver is to refuse them for fear it may hamper their treatment. “Our advice is to let them have they want, since they may not have the chance to try it again,” says Sharon. She notes that most of the time, the patient will just take one or two bites to release their longing.
Myth #5: Palliative care nurses are similar to private nursing services
Both Tai Yun and Sharon are often asked whether they could come on a daily basis or stay with the family to care for the patient. “That is the job scope of a private nurse,” says Tai Yun, adding that their responsibilities extend the normal services of a nurse such as changing wound dressings or cathethers, bathing and feeding the patient. “Palliative care nurses take a supervisory role. We teach the family members how to take care of the patient, counsel them on what to expect and what to do if his condition deteriorates. If the family has hired a private nurse, we teach the nurse how best to take care of the patient,” she elaborates.
The Assunta Palliative Care Centre (AsPaCC) was established in 2010 to care for terminally ill patients residing in the outskirts of the Klang Valley where no other hospice services are available, such as Sungai Long, Kajang, Semenyih, Bangi, Shah Alam, Jenjarom and Kuala Selangor. Since its inception, AsPaCC has made close to 500 home visits. AsPaCC is one of the key pillars of Assunta Hospital’s community service.
To find a hospice closest to you, please visit the Malaysian Hospice Council www.malaysianhospicecouncil.org or ask for a reference from the doctor.