Experts call for awareness in end-of-life care

Hyderabad: Modern medicine has ensured that people live longer lives, but often with more disease. And as the end nears, not many patients are asked what they want. The end is traumatic for most, especially those with terminal disease. Those who can afford it breathe their last in an ICU after aggressive treatment; the poor often die neglected and without treatment.

In such a scenario, it’s vital to create awareness about palliative and end-of-life care that makes dying easier. But it’s important to make relatives and loved ones a part of this conversation. Death is classified into sudden death, terminal illness, organ failure and due to frailty and dementia.

Doctors, palliative care experts and legal experts who gathered to discuss 'End of Life Care’ stated that the most difficult thing to do is bring near and dear ones to terms with the fact that medically “no cure is possible” and only “care” must be provided. The transition from cure to curative care is a tough call and doctors often wait till the last minute for that one response from a patient, which can signal a bounce-back.

M.R. Rajgopal, chairman of Pallium India, a palliative care unit, explained, “When patients are at this critical juncture doctors are also confused as they do not know how to talk about the end stage to the family. Their dilemma comes from the fact that the medical curriculum only teaches them to save lives, their primary duty. When they realise that medicines are no longer working, they don’t know how to tell relatives that the patient is dying. This is the most difficult part for the medical fraternity and we find a lot of doctors struggling.”

Lack of effective communication, compounded by inability to choose the right words, is one of the most difficult tasks.

For relatives, even the introduction of palliative care is not easily accepted.

In the case of cancer patients, it is only after the final round of radiation or chemotherapy that the family accepts that there must now be a transition hospital to hospice. However, the number of cancer patients making it to hospice centres is less than one per cent.

The idea that everyone lives by is that there is a cure and it will work. But what in cases when it doesn’t work?

Dr. Raj K. Mani, a senior doctor spearheading the concept of end-of-life care, explained, “With brain dead being accepted and organ donation finding a foothold in people’s minds, they also need to come to terms with the end stage of life. We need awareness and a change in public attitude.”

Presently, most hospice centres only have cancer patients. But there are a large number of dementia and Alzheimer’s patients who require care; their families are often not clear where to go and whom to approach.

Dr. Sridevi Seetharam, pathologist and palliative care provider, said: “For cancer patients the stay is a minimum of a month and maximum a year. But in dementia and frail patients, care can extend for years together. We need proper systems in place to take care of them.”

The need is to identify, accept and then work on a solution where these patients are given the empathy and care they need and not left outside hospitals or locked inside homes.

Who decides on end-of-life care?

• A declaration (living will) to family members or children that medical care must not be provided in case of terminal illness has been struck down by the government as legally invalid.
• Advance directives to family members are also not considered. The rules state that the medical team must decide.
• Medical experts state that ICU expenses are highest in end-of-care patients, taking up almost 70 per cent of their total expenditure. Only 14 per cent people are able to bear these costs. More than 30 per cent families take loans or sell property for this. Those unable to do so opt for no care and often neglect patients.

With the patient unable to decide or not in a capacity to take a decision, who will tell loved dear ones their the end is near and medically nothing can be done?

• Emerging home-care facilities are able to take care of wounds, injuries, injections and also provide other palliative care. But the emotional connect is predominant among these patients and they yearn to find their space in the family system in the last days.
• Maximum patients in this stage of life complain of neglect, lack of care and emotional abandonment by family members.

‘Kin need to be more pro-life’
While euthanasia is not legal, it’s often the only recourse of tired patients and drained family members.

Senior neurologists in the city say they sometimes encounter relatives who tell them to “go slow” and “not be very aggressive” in treatment to very senior patients.

A senior neurologist at Nizam’s Institute of Medical Sciences explained, “We are asked what are the chances? Most doctors evade this question for a few days. If there is no improvement in the next two to three days, the relatives say the treatment must be slow. While this is taken in writing and also a video consent, the number is about one per cent of the in-patients.” Doctors state that understanding of relatives helps them decide the case better.

Dr. Sujeet Ranjan, senior pulmonologist who also runs a palliative care centre, said: “In cases of chronic obstructive pulmonary disease, the patients come with breathing problems and often want to get back to stability. But the later stages make life difficult. If the family demands results, the situation becomes complex and tough to handle.”

Experts state that there are some who cannot tolerate the sight of tubes, catheters and other intensive care treatments, but there are many others who want their loved one fit-and-fine as soon as possible.

A senior doctor, seeking anonymity, explained, “Often relatives state that the patient walked in all hale and hearty and is now bed-ridden. They fail to comprehend that there were ailments within and those aggravated, which has led to this condition. When people are coming with multiple diseases and their diagnosis is done at the hospital, then allowing the person to walk back home is very difficult.

“This is often not explained by doctors who merely continue with various types of treatment till the body responds,” the doctor said.

It is only when there is no response that they ask relatives to take the patient away, which is often not taken well.