The Final Thoughts

Many classic literature works have made several things clear about life. But the most important among them is that "The only certainty in life is Death". Every living thing, and most certainly human beings, have a definite death that comes as their possession and baggage with the birth itself. Sri Krishna has given the essence of this in this Shloka of Srimad Bhagavadgita (Chapter 2.27):

जातस्यहि ध्रुवो मृत्युः ध्रुवं जन्म मृतस्य च |

तस्मादपरिहार्येSर्थे न त्वं शोचितुमर्हसि ||

Death is certain for one who is born, and rebirth is inevitable for one who has died. Therefore, you should not lament about the inevitable. 

Some people are ready to discuss the issue of death at any time, though it comes only when it wants. Many people are not willing to discuss about it either for fear of death or a feeling that why should it be discussed when we do not know when it will come. But the issue often haunts some individuals or their families and friends every day. We keep reading about either patients or their family members requesting for "Merciful Death". Whether such a thing should be legally allowed has been discussed since a long time and there are instances when judicial intervention have been sought in cases where no useful purpose is served in keeping the person alive as there are absolutely no hopes of nursing back to good health. There is also the issue of donating organs of the body for use of someone elsi who is waiting for a donor. 

There are issues about decisions to be taken about treatment to a patient when the patient himself or herself is unable to take decisions about hospitalisation and continuation of treatment. There are also concerns about the real wishes of the particular person as to how treatment should be given, end should come and later dispose off the mortal remains. 

In the blog post titled "To Be Or Not To Be (in ICU)" of January last year (Please click here to read it), there was a discussion on this issue. In the background of directives by the Supreme court of India, Ministry of Health and Family Welfare, Government of India had come out with "Guidelines for Intensive Care Unit Admission and Discharge Criteria" in January last year. Details are available in the above blog post. 

Yesterday (31st January 2025) Karnataka State Government has become the first state that issued a formal order defining the appropriate authority under the Transplantation of Human Organs and Tissues Act, 1994 to give effect to the supreme court directives. 

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That was about taking decisions regarding treatment in hospitals, continuation or termination of life support systems and dignified end to a human being. Then there is also an issue about what were the desires of the person in respect of non-medical issues at the end of the life. Whether he or she would like to receive visitors or not, whether some post-death ceremonies or service should be done and finally how the mortal remains are to be disposed. 

In the year 2016, an interesting case "Anstey V Mundle & Anor" came up before the England and Wales High Court. A person born in Jamaica in 1935 came to England in 1960 to work as a transport engineer and died there in the year 2016. Two daughters wanted him to be buried in England whereas another daughter and niece wanted to take the body to Jamaica for burying it by the side of his mothers grave there. 

The details of the case and connected issues are discussed in the blog post titled "Who Owns Your Body" of January 2019. Please click here to read it. Should not those left behind value the wishes of th deceased? If so, how to know what were they and having methods of making them formal and clear to all concerned? This is indeed important especially in the context of present day civilised society. 

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Even if someone desires to record his thoughts and plans for covering such an eventuality, given that this day will certainly come in everyone's lives one day, how to go about it? Is there some method where such wishes can be recorded, trusted by others, and could be legally acceptable? If so, what are the areas covered by such a recording of the wishes? When should such a recording be done? Is it necessary that when such recording be done all the concerned persons and witnesses should be present in one place? Do hospitals or care giving organisations trust and accept them? These are indeed valid and important questions.

There are many websites that provide answers to these questions. One can open an account by paying a small fee, record their wishes, designate persons who can take decisions on their behalf, and get it attested by witnesses. One can check before recording their wishes as to whether your hospital or care provider accepts them. The designated persons and witnesses need not be physically present in the same place at the time of recordings. They can confirm their assent by electronic means wherever they are on earth. (Persons living in Moon and Mars are not covered for the time being!).

The recordings can be made by any adult irrespective of age. This is so because when the requirement for its use will come, no one knows. Elderly people should naturally do so immediately. 

What are the broad areas covered by these wishes of the declaring person?

They include:

• Persons who can make health care decisions when the declaring individual is unable to decide for self.

• Persons can be designated in the order of preference. Usually three persons can be identified.
• The preference may be decided by considering personal choice, most likely availability for taking decisions, etc. 

• Type of Medical Treatment desired or not desired.
• Making medical tests, scans, etc.
• Admission to hospitals, nursing homes, rehabilitation centres etc.
• Handling and releasing medical records for research etc.
• Moving to a different place or location.
• Donate organs or not.
• Apply for medical insurance, care and other similar programs.
• The extent to which the designated person can act.
• Starting, keeping on or discontinuing life support systems.
• Giving consent for surgical operations etc.
• Comfort level one wants when the end is nearing.
• Administering pain killers etc. 
• Help by way of placing moist cloth, giving warm baths, etc.
• Other care like giving shaves, massaging etc.
• Reading of spiritual texts, poems, prayers etc.
• Having near ones chant a particular song, stotra  or prayer as desired.
• Treatment expected by other people in those final moments.
• Having people around or being left alone etc.
• Holding hand or being talked to etc.
• Having pictures of loved ones or objects around.
• Playing of favourite music.
• Whether end should come at home or hospital etc.
• How one would like to be addressed at that time.
• How one would like to be remembered by the loved ones.
• Seeking forgiveness for past actions.
• Communicating thoughts about relatives and friends.
• Message to family members who may not be in good terms.
• To be buried or cremated.
• How ashes should be disposed, if cremated.

These are some of the areas that one may give wishes. These are only indicative and scope is available for adding others, subject to provisions. 

Just as Wills for disposal of a person's financial and physical assets, these Wishes documents can also be changed from time to time as needed and decided by the person making the "Wishes Document".

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The days of carrying bulky files, prescriptions and test reports while visiting a specialist or hospital are long gone. Most of the hospitals use modren technology for patient record maintenance. Labs upload test reports as and when they are ready. The patients have the respective App (say, like MyChart) on their smartphones. The reports are accessible to patients as well as doctors and other professionals on line round the clock. They get updated in real time. Fixing of appointments, rescheduling or cancellations are done through the App. Messages can be sent to the doctor's office and reply comes in hours. For many issues not requiring physical presence of patients, video conference consultations are available. Discussions summary during visits and specialist's observations made on medical test reports can be viewed by patients as soon as they are ready.

In respect of certain reports (for example, Echo test reports) that require scrutiny, discussion and decision on further course of actions, appointments for tests and consultations are scheduled together so that repeat visits to the facility is avoided. Payments for services are possible on the App at convenience so that there is no need to wait at payment counters. Entire history of patients is available to service providers and patients. It is also available to other trusted family members and friends at all times if the patient is willing to share. The "Wishes Document" created as described above can be uploaded on these Apps so that the service providers and medical professionals have the authentic patient's feelings and wishes on hand readily.. 

Interested persons may scan through the websites available for this purpose, check suitability in their respective country and areas of living, and decide. fivewishes.org is one such website that can be seen for having a detailed picture of the whole exercise.

To Be Or Not To Be (in ICU)

When we were in school and in college, some sixty years ago, we were required to read at least one "Classic English Literature Work" as a part of the detailed study portions. Of course, there used to be another well-known work for non-detail study as well. These were part of the study material for English paper taught as a language subject. The non-detailed study book used to be one of the more famous novels at that time. David Copperfield, The Pickwick Papers, Robinson Crusoe, Gullivers Travels, Tom Sawyer or some other similar book. But the prescribed text for detailed study used to be usually one of the plays by William Shakespeare. There used to be Julius Caesar or Romeo and Juliet sometimes, but the usual ones were one of the four more famous tragedies - King Lear, Macbeth, Othello and Hamlet. The professors would often say that they represented the tragedy of Arrogance, Ambition, Jealousy, and Indecision, respectively. 

Hamlet, the Prince of Denmark is caught in a situation where he is unable to decide one way or the other. His famous lines (known as soliloque) go like this:

To be, or not to be, that is the question:
Whether "tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them. To die - to sleep,
No more, and by a sleep to say we end......

His life ends in a tragedy before he can make a decision either way.

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We all have had, and continue to have, such moments of "To be or not to be...." many times in our lives. Some such moments are insignificant, especially when you look back at those issues years later. Some such moments were indeed very significant and we congratulate ourselves for having decided the way we actually did. There are also moments which called for decisions, but we made the wrong ones and rue them much later in life. Then of course, there were indeed moments when we could not decide one way or the other and ended up as our own prince of Denmark. 

All these were important moments in our own lives. What about our taking a decision that greatly influences someone else's life? Especially when it is a real matter of life and death? We are often called upon to decide admitting someone to a hospital for treatment. The issue may not be serious at that time and in our judgement only a matter of routine hospitalisation and being back home in a few days. Again, the decision to be made may be about a person to whom we are accountable or responsible for reason of being a blood relative or a close friend. It may also be a potentially serious and life threatening situation. 

There are times when such decisions are to made when the patient in question is conscious and capable of taking decisions. It may also be cases where the patient is incapable of or unable to decide or understand the implication of the decision. Then there can be instances where the patient does not want to be hospitalised but there are good chances of recovery if done so. Various permutations and combinations throw their own possibilities, problems and "to be or not to be..." situations. "Who will foot the bill for expenses?" is another very important consideration, especially in cases where ours is more of a helping hand.

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The problems become even more acute after patient is admitted to the hospital. Complications may develop and now the issue is whether the patient should be moved to a ICU or not? Like the many avatars of Lord Vishnu, ICU also has many avatars. Intensive Care Unit (ICU), Critical Care Unit (CCU), Intensive and Critical Care Unit (ICCU), Intensive Therapy Unit (ITU) are some of the well known names, but there could be others as well. The ICU in a small hospital may not give the intensive care except for the fat bills, but in super speciality hospitals almost everything is available, except guarantee of retaining the life of the patient. 

The climax of the "to be or not to be...." moments is reached when decision about placing the patient on ventilator is to be taken. The average cost of keeping a patient in ICU and ventilator support is upwards of USD 10,000 or equivalent per day in many hospitals abroad. Costs are very high in India as well. The costs are arrived by the hospitals after taking into account the cost of land and building for the room,  capital cost of the equipments, clinical and non-clinical support costs, medicine and manpower costs etc. The fee for the team of experts is naturally expected to be high. The ICU professional team has many specialists like Cardiologist, Pulmonologist, Neurologist, Nephrologist and others depending on the type of care required. The last scene in this episode will be when a decision about taking the patient off from the ventilator is to be taken. Many families prefer Caesarean (C-section) deliveries so that they can fix an auspicious time for the birth of the child. in the case of taking off from the ventilator, it is often to decide when one should say goodbye to the patient. 

There are complaints galore about hospitals moving patients to ICU and putting on ventilator support more for their reasons rather than patient's requirements. There are also complaints about patients being put on ventilator for extended periods when chances of recovery are non-existent. Most of the health care institutions follow ethical standards, but there are black sheep here too. 

Overall, there are many serious issues about "To Be Or Not To Be in ICU".

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The wish of the patient is considered as paramount in some countries. There are legal provisions to appoint a person or persons to decide on such issues when the patient is unconscious or incapable of deciding for specific reasons. Many patients desire that they may be allowed to exit the world without the sufferings of the systems for higher health care. 

It is in this background that Ministry of Health and Family Welfare, Government of India has now come out with "Guidelines for Intensive Care Unit Admission and Discharge Criteria" last week. It is a seven page document (actual content is only three pages) compiled in consultation with 24 experts in the field. 

It lays down guidelines on the following aspects:

• What is an ICU and who is an Intensivist.
• Expert consesus statement giving
• ICU admission criteria
• Who should not be admitted to an ICU
• ICU discharge criteria
• Minimum patient monitoring while awaiting a bed in an ICU
• Minimum stabilisation required before admitting to an ICU
• Minimum monitoring required for Inter-facility transfer

The document is available at the following link:

https://dghs.gov.in/Uploaddata/Final%20Guidelines%20for%20ICU%20Admission%20and%20Discharge%20Criteria%2023.12.2023.pdf

It is advisable for all concerned to spend a few minutes and read the document to understand the issues involved. This will come in handy while taking a decision in "To be or not to be..." situations.