Discussion on Palliative care: Dr. Abdulla Manima & Shabeer Rarangoth
മലയാളത്തിൽ വായിക്കുവാൻ ഇവിടെ ക്ലിക്ക് ചെയ്യുക!
1. As the palliative care system is known in the field of palliative care in the society, would it be feasible to say, how you see its service lines reaching from 1993 to 2023?
Palliative care began at a very historic juncture in modern times. At the time Kozhikode palliative care was started, the emphasis was mainly on cancer care. The people who started it back then were people who were also interested in pain management, so they also considered some acute pains that are not cancer and chronic pains such as pain from tobacco diseases.
A change in community-based palliative care over the past 10-30 years has shifted the focus of care from cancer to other chronic diseases. In cancer itself, there has been a revolutionary change in treatment over the past 30 years. In ancient times, cancer was almost synonymous with death. Only a very small percentage of people were cured. But that is not the nature of cancer today. A large percentage of people experience remission. In some cases it can be as high as 70 percent.
There has been an increase in human life span by ten or thirty years. Many diseases are aggravated by it, such as neurological diseases, diseases like dementia, motor neuron diseases and many other diseases. Due to better treatment of diseases affecting the internal organs, human life expectancy has increased. Naturally, all of them will require palliative care at one point or another. A significant change from 1993 to 2023 is that palliative care has shifted from curative palliative care to holistic care for chronic conditions.
Another difference that struck me was the focus on palliative care and institutions at the beginning. In the particular case of Kerala and India, palliative care has shifted almost entirely to home-based care in areas such as Malappuram district, from the beginning where the idea was to use existing home settings to do it cost-effectively. And the obvious change that we see is that palliative care has become a social movement in Kerala after the national movement in Kerala where people’s participation has taken place on a large scale. Not in the sense that it has completely changed. Popular participation as a security mechanism has been largely achieved. It has become such a fully attainable potential situation.
Community palliative care has come to accept three main elements as basic units. One is coverage. Who Needs Palliative Care, make palliative care available to all types of people who are eligible for palliative care, regardless of disease or condition. Making them available goes beyond making them available when the situation is ready for us, and then being able to follow up with them. Providing uninterrupted care is the second. Continuity. The third is quality.
There is a comment coming from the palliative work professional or administrator. How many patients have you seen today? Is the number that low? What was the problem there? Had the urinary tube changed? No, Was the wound to be bandaged? No, Was there any enema to give? No, Was there a nose tube or something? No, If so, was there a need to go there? Why did you spend so much time there?’ That attention is often in the number! Some special systems have to see so many patients in a day. Even some community palliative care practices do so. I’m not talking about underestimating the number of patients. Rather, we need to understand how much time each patient needs, and what is actually being lost to bedridden patients.
They lose a lot of freedom and self-esteem. Another thing to watch out for is infinite stretches. Often even basic needs are postponed. Brushing teeth, bathing and eating all have to be postponed. As a nurse friend of mine said, they never knew when the bowl of food they ate would be taken away from their bed. These are the people who are not even able to stand up and urinate on their own and do not even know when the urine poured in the pot will be removed from them. This happens because of the natural rush of people at home. They are not deliberately neglecting patients. If we say to be stagnant in a society that lives in so many constraints, it means that we are far behind the course of that society. As much as a person who is strapped to the back of a moving train must suffer, the sick suffer as much. It is in these areas that quality care is demanded.
2 .Do you think the quality of care be improved with advanced machine aids?
It doesn’t have to. Although palliative care is often described as ‘low tech and high touch’, palliative care is also becoming quite high tech. Many palliative units are focused on providing home automation systems that facilitate care. The problem is that quality is often measured in these things. A recent study of four or five palliative care units enrolled more than 130 patients and found that less than 20% of these units required urinary catheterization or similar procedures. Most of the rest of the people have basic needs such as bathing, brushing their teeth, cutting their nails, removing pubic hair, performing basic body hygiene, coming out from the darkness of the room to a place where light can be seen, and being able to see the yard and the koala.
There should be a due diligence in existing palliative care workflows. To reach all the patients, we have to keep the count of so many patients per day. The question is whether the units are able to ensure the quality that a patient receives through these runs.
3 . Would it be ok to say that you want to spend more time with a patient?
Sitting with the patient for a long time does not mean quality. Many things can be learned from the time spent with the patient.
For example, recently a patient was told that he was urinating very well when asked about his urine while trying to find out how he was doing with bathing, brushing his teeth, and the basics. The comment came that ‘urine is less doctor’. Asked a little more carefully: ‘How often do you urinate at night?’ The family members also gave a general comment that ‘I go five or six times, it’s going well.’ The patient is not a talkative person. We all know that if we urinate more than once at night, we should be concerned about it. After receiving this information, the patient was quickly made to urinate and the tube was inserted. Normally, no more than 20 milliliters of urine should be left in the bladder after voiding. 240 milliliters of urine is then collected from the patient’s bladder. Keeping that much urine in the bladder for six months increases the risk of kidney disease. This is all that has been said: with experience and the time to ask questions, it is possible to understand that there is something wrong with many things that the family thinks is okay in general.
It takes about one and a half hours to go to an average patient, ask questions, make the necessary interventions and write it down. We get six hours of home care a day. It will take only three and a half to four hours to complete the necessary running and food breaks. Seeing eight patients a day during this run is detracting from the time spent on this one patient. That said, increasing numbers is not necessarily a bad system. But the question is whether it is right to see more patients in a day as excellence if the number increases.
At least some understand that that is quality, pointing out the state-of-the-art systems at home. Even if it is a part of quality, it is not correct to think that it is the only quality. Quality has to come down to meeting the basic needs of the patient. Even if diversification is a good thing about palliative care, it is undesirable for diversification to become competitive. It may lead to the destruction of the system itself in the future. We have information that by 2060, 1.5 lakh people will be over 65 years of age in Malappuram district alone. What a social burden these 15 lakh people over the age of 65 will be! Today Malappuram district is seeing between 35,000 and 45,000 patients. These so-called people are many times that many people. It does not mean that they will all be in bed.
4. Palliative care is also being done through the government system in the name of pariraksha. Community palliative care is also practiced in such situations. , would it be possible to say the relevance of community palliative care systems in this context, how do these two systems fit together and where do they clash?
There does not seem to be much difference in looking at palliative care as government palliative care and non-government palliative care. The needs of the patient are the same. If both groups care about the patient’s needs, there is no need for a confrontation. Because both are managed by humans, and often because human characteristics can influence this management as well, it is common for systems to lack coordination, at least in some countries. The same may not be the same from north to south in Kerala. Where these two systems go hand in hand, some problems are likely to arise if there is insufficient coordination. One group coming to one house in the morning and another group coming to the same house in the afternoon, seeking information and leaving, is a glimpse of how palliative care can be a blessing but at times it can turn into a misery for the family.
Another thing is that whoever runs the system, be it government or not, the practices and characteristics of those operators will also influence the system in question. Governmental systems naturally have some barriers. Some will also create difficulties that are not revised in time. Often, because people who make policy are likely to stay away from the practical field and people who work in the practical field do not come to policy making, there may be some problems and difficulties between the two groups.
Sometimes it is not possible in policy making to incorporate all feedback from the grassroots level. Policy making is mostly done by meeting 80% of the people and proposing solutions to 80% of the problems of 80% of the people. This often does not do justice to local needs. The same limitation can occur in such systems due to the attitudes of the people who carry out community palliative care.
5. The rise of home care systems is from the fact that the patient is important. There is an allegation that palliative systems are now becoming more institutionalized. Do you agree with that?
Depreciation is a global phenomenon. How to deal with it is always the problem. Not that the famous Kattanchaya and Paripupavada should be glorified. However, the possibility of institutionalization is very high because growth is based on the attitude of the managers to establish some visible and visible things, and the growth is calculated by evaluating how many assets there are without any deliberations. Institutionalization itself can be of two types.
One could be construction. Another is the institutionalization of the systems themselves. Although there is some rush into palliative care practices now, it was not the case in the past. No one was there to take over. At a time when no one came forward with much interest, this was a system that few people were interested in doing. Naturally, when running a system for a while, when new people come in, they don’t catch on to their methods, or from the feeling that we are becoming irrelevant, there may be some rebellious attitudes among people. Thus systems can be institutionalized.
It is believed that once institutionalization goes beyond a certain limit, it will become a disaster. That being said, it does not mean that all people who own buildings are bad or that buildings should not be used. Institutions and some buildings may be useful as places where people can gather together for practice planning, policy making, outreach, consultation, etc., but when palliative care focus shifts to the need to maintain institutions, it is the patients who are neglected.
As a friend of mine has said many times, we cannot expect a demand and demand strike on the part of the patients as seen in any other field as they are people who are unlikely to come before any office for their needs. There won’t be. Naturally, their needs will be met from our own observations. Then these mechanisms may interfere with that vision.
However, saying ‘there is no problem in our country, don’t you see, we have built a new building, we have more vehicles’ can be seen as an indication of how far palliative care has grown. But how many home care units are operating in the same system, and how many patients are satisfied within each home care unit?
6. As the Palliative care in Kerala is entering its 30 th year,could you please explain wheather a comprehensive social audit possible?
That is a big thing. This is the thirtieth year of palliative care in Kerala. If we want, we can say that youth is in danger. Youth is always a very brave age to face people. Then the youth will naturally face the people. What we have to ask about palliative care is whether palliative care has this courage.
Recently, as part of quality assessment, a clinic was thinking about preparing a system for patients to write comments without specifying who or what. By placing boxes like ballot boxes in shops and public places, they are creating a system for patients who can access the clinic’s services without revealing who they are and whether they are satisfied with those services. Nothing is ever going to identify who put it. Check out some of the questions prepared for that in column-1.
Do we have the courage to ask these questions? How many current palliatives can ask this question anonymously? So how many units can face the public? I think that would be a very late litmus test. Only then will we get a real feedback. It doesn’t matter how much home care we’ve gone to or how many buildings we’ve built or how much money we’ve spent. If all that is important, what is more important is whether a patient and his relative are satisfied. People will be satisfied with whatever they get. There is no doubt about it. But what matters is whether these 30 years have changed to a point where a patient or a beneficiary or a would-be beneficiary can confidently say, ‘No, I’m brave, I’m not going to be isolated if I’m laid up, palliative care in my country will take care of me’. The litmus test.
7. Do you believe that the younger generation is not paying serious attention to palliative care?
In terms of the environment in which I currently operate, young people are the driving force behind palliative care. I think that the first generation almost all the important people left the place. The first generation has been in the field for about 10 to 30 years. Many have undertaken this palliative care in their younger years, around the age of 30-35. Many of them have turned to old age or physical disabilities. Apart from that, in many places they have been conscious of the desire to bring in the new generation, and in almost all the areas, the method of youth management has come. If you ask how conscious this climb is, there is no doubt that all the participants are conscious.
But if you ask how many young people participate in this with the same enthusiasm as when the football fair is held in Qatar, with the realization that this is a mechanism to save me or my parents when they go to bed tomorrow, I don’t think there will be even 10% of the palliative fans of football and cricket fancies that exist today. If you ask if it is a criticism, it is half a criticism.
I remember a recent conversation. While sitting down to tea in a tea shop during palliative care home care in one area, an older man who had previously been active in the palliative care system in that area made some comments about current palliative care. He made some comments of his own and made a comment about not bringing in enough young people. He said that it was the weakness of the current leadership. A volunteer who was with him challenged this reason and asked:
It’s a time when ball games in Qatar matter. Who inspires and who educates the young people who wake up in the middle of the night and wake up at three o’clock to sit in front of the TV screen? Is it part of someone’s special effort? Almost 135 crores of rupees have been spent on flux boards in Kerala without anyone’s motivation. If you think about it in that sense, it cannot be said that it is so optimistic.
8. At least sometimes there is a tendency to put patients on display ,in the name of patient care and to trade their self-esteem to raise funds.Would you be willing to explain How you see it?
Without a doubt, putting patients on display is extremely offensive. Not only that, but not to say it as a very local criticism, we see singing carts on our streets collecting money for the sick. At least some friends have expressed concern about it.
There is a possibility that there is some truth in it. If we make a system for every country to look after their own needy people, if we go to the system of protecting the needy people in their neighborhood mosques or temples or party offices, there will be no problem of lack of trust anywhere.
There is no need to put patients on display. But in terms of performance, palliative care is naturally unlikely to become a field of isolated sanctity, as the people who work in this field, as in many other fields, are the fringes of society. All the deficiencies seen in our society will be reflected in palliative care to some extent. It is natural. Such a system must be resisted through self-critical and reformative interventions within it. There are no other shortcuts. A more critical approach than any cadre party is still active in the palliative care system.
9. The message for Palliative Care Day 2023 on 15th January is ‘For my tomorrow, for my care’. What is your opinion on this message?
The very profile of our lives is changing. Social conditions have changed. Life expectancy is increasing dramatically. Just as a girl who dies at age five is unlikely to develop dementia, a boy who dies at age fifteen is unlikely to develop dementia. But he is a dementia candidate when he lives to be 90 or a hundred years old. There are many diseases that bring longevity.
Similarly, in terms of social conditions, all the districts of Kerala have been stabilized population wise. Further decline in population is likely. Families that previously had five or six children may have the possibility of going to Naam two for two, Naam two for one, Naam one for us, due to educational and social conditions. It is part of a natural process of elimination. If half of the children born die, more and more children will continue to be born. If all the children born remain, the birth rate will decrease. This is a natural process. As a part of that, almost all districts in Kerala are moving towards systems similar to those of Western countries. One of the early lovers of palliative care, Jan Stern Pavad, wrote in his book: “Europe has entered into an obligation that a young man have to protect almost three generations.”
It is a situation that will soon happen in India as well. We’re moving toward a possibility where a 30-year-old can be responsible for five or six people: father, mother, father’s father, mother’s father, father’s mother, mother’s mother. Many of them are educated and there are few opportunities in the countries where they were born and brought up, so it is a very natural possibility to migrate to other countries. Complaining that children are not watching is not the right policy and attitude. We are moving towards a situation where that is impossible.
Naturally, the slogan ‘For my future, for my care’ has great relevance. If we can establish for ourselves a protection system, a safety net, a social safety net in the name of palliative care or something else in the time we have today, that would be the biggest security guarantee for anyone in the future. If we were told to invest in savings as well as financial security at a very young age, we need to shift our thinking to social security for the next century. All those things will keep coming in one way or another.
We live in an age of old age homes. The people who reach there are not educationally or economically disadvantaged people. Their children are abroad. None of them have the opportunity to visit their mothers and fathers. Such are their social conditions. It is impossible.
In that situation, systems like Old Age Home came in to protect them. But, knowing that the burden to come is more than they can bear, a very relevant slogan has been raised by the palliative care activists of Malappuram district in connection with January 15 this time. The motto is ‘My future is my care’. It is considered that it is a relevant slogan that should be brought to the attention of all the living places and not limited to one year as a slogan.
Questions given by a clinician as part of self-assessment.
* Are you satisfied with the palliative care services you receive?
(Satisfied/Very Satisfied/Not Satisfied)
* Do you have regular access to a nurse at least once a fortnight?
(there is /almost/ no)
* Do you get the services of a palliative doctor at least once a month?
(there is /almost/ no)
* Have you missed the palliative service on Sundays you wanted?
(Does not apply/ has/ sometimes/ often/ does not)
* Have you missed palliative care between 5pm and 9pm?
(Not applicable/Have/Sometimes/Often/No)
* Have you missed palliative care in an emergency?
(Not Applicable/ Yes / Sometimes / Often / No )
* Have you wanted palliative care for your dying patient in difficult circumstances and not received it?
(Not Applicable/ Have / Sometimes / Often/ No)
* Have you felt that you could talk to/reach out to palliative care providers when you feel you need someone to help care for your patient for at least a day or two?
(does not apply/ has/ sometimes/ often/ does not). Can you write an explanation about this?
* Have you felt like asking/requiring palliative care to take your patient out for a bath or out of the house?
(does not apply/ has/ sometimes/ often/ does not). Can you write an explanation about this?
* Have you ever felt that you could talk to/reach out to palliative care workers at any time of distress?
(Does not apply/ has/ sometimes/ often/ does not) Can you explain this and write it down?
* Have you felt that you could talk to/approach the palliative care team about financial or other matters in the family other than the treatment of tube changes, wound dressings, medication etc.?
(Does not apply/ has/ sometimes/ often/ does not) Can you explain this and write it down?
* Have you felt that you wanted continued attention and did not get it from palliative care providers?
(Does not apply/ has/ sometimes/ often/ does not) Can you explain this and write it down?
* After the patient is admitted to bed and receiving palliative care, has the palliative care not been sufficient for the needs of the patient and have they had to look for other treatment facilities without the insistence of the palliative care providers?
(not applicable/ have/ sometimes/ often/ not) If yes, why?