Ever since 32-year-old Rajesh turned paraplegic following an accident three years ago, his life became increasingly lonely, and despite constant care from his mother and sisters, he slipped into depression.
It was then that palliative care and home care made a difference in his life. Now, Rajesh is able to stand with support, get on a wheelchair on his own, watches television, reads, and is generally more positive about life.
For Sathyan, a 50-year-old who cares for his 72-year-old mother paralysed by stroke, palliative care has helped him take much better care of her. Mani, a 67-year-old diabetic patient with 40% of his leg amputated, and wife Sathy, 64, are managing their lives better due to regular palliative care home visits.
Quality of life
Unlike what most people believe, there is more to palliative care than just caring for terminal stage cancer patients or other end-stage disease patients. It is an approach that improves the quality of life of patients and their families. Relief given to any kind of suffering is palliative care. And it is not just by medication alone.
Palliative care is total care, considering the patient and family as a single unit and addressing physical, psychological and spiritual distress, said Athul Manuel Joseph, who leads palliative care at the Ernakulam General Hospital.
Palliative is pain relief in the physical context, but it is also not going for active resuscitation measure, said Dr. Joseph.
Most chronic illnesses have slow progress, hence it is important to identify what matters to the patient. Cases could be as wide ranging as cancer, heart failure, liver failure, kidney failure, lung failure, Alzheimer’s disease, Parkinson’s disease, paraplegia, accident trauma and so on. Palliative care is highly individualised in that sense, he said.
“Resuscitation, if given to a patient, when the reversible cause does not exist, is to give unwanted misery to the patient,” said Dr. Joseph, adding that palliative care helped patients be surrounded by loved ones in a home setting during the last stages.
Identifying what is necessary and what is not is where palliative diagnosis comes in, and it is acquired only through training and subsequent practice. Unfortunately, not many doctors were part of the palliative training programme, perhaps because it was not a lucrative form of clinical practice, he said.
The number of young professionals taking up this mode of medical care is less, keeping away dynamism, professionalism and sustainability of palliative care.
Palliative care does not mean providing medicine to prolong life, but providing medicine to support life as actively as possible until death, helping the family to cope with the situation and providing a positive outlook. And, it required a team approach, said Dr. Joseph.
Number of nurses
However, the number of people involved in palliative care is too low to meet the population’s demands. The State-level ratio has shown a slight improvement - from the earlier one nurse to one lakh people, there is at present a nurse for 30,000 people. Hence, a nurse providing primary care to a patient is able to meet the patient again only after one-and-a-half months.
It is to bridge the gap that nurses were trained in home care services at the Ernakulam General Hospital through a project termed Arike. It is a facility of home care for those who can afford to pay for a nurse either for a few hours or the entire day. The Kudumbashree Mission has now geared up to offer palliative care in the district.
Anil Kumar G., palliative care trainer associated with the Social Justice department, said while there were around 20 centres in the district offering palliative home care services, there was no assessment of their quality. Only big private hospitals providing palliative care managed to have a team led by a doctor, and some of those services were running quite well, he added.
Of the five main aspects of palliative care – social, spiritual, economical, physical, and psychological, only the physical aspect is addressed by most care givers. There are some volunteers who are able to meet some socio-psychological aspects too, but the majority of them withdraw from service when the patient looks for extra help from the care provider, such as help in getting their pension papers in order or assistance in finding another facility.
M.S. Sajeevan, a volunteer in the field for over 11 years, said, “Many people call up just to talk, or they want me to visit them regularly. They share many of their concerns with me, sometimes even those that they have not shared with their own kin.”
Published - February 21, 2020 01:06 am IST
