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Issues of end-of-life care

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Of anxious relatives, choice of care mode, and huge hospital bills

Many get upset over the enormous bills for treatment in corporate hospitals, especially for end-of-life care. Elderly people who are terminally ill and who have a number of medical problems are often brought to these hospitals for treatment. At the outset, a huge amount is spent for initial diagnostic tests and medical treatment. Once the diagnosis is established as terminal the daughters and sons fly down from abroad. They are at this point willing to spend any amount of money for the sake of their parents. After the diagnosis, the relatives are informed about the prognosis.

If a patient can be cured, he or she would be out of hospital in two to three weeks. But when they have incurable conditions or diseases, initially the children want everything to be done for their parents and encourages the hospital to give the full treatment regime. The hospital happily obliges and sometimes goes overboard. A few days on, the children realise that their parent is still in the same state, neither improving nor deteriorating. They get alarmed because their meagre leave from work is running out. They start questioning doctors about the treatment and the prognosis.

These children are torn between the need to get back to work and the intense desire to look after their parents. It becomes even harder as the days become weeks. As the frustration and the fear of losing their jobs mount, they are forced to make a decision. They begin thinking of taking their ailing parent back home but are concerned about what society would think. The stress builds up until they finally make the awful decision to leave their parent to the mercy of a home nurse and get back to their job. Only then do they make the decision to quit the hospital.

And when presented with a huge discharge bill, they are devastated. Now that they are at the point of losing their job, frustrated because they are unable to give the care they want for their parent and face a huge bill from the hospital, and to top it all, their parent is still no better, they turn against the hospital, and a lot of yelling and fighting often ensues.

Now that you have the context, let’s analyse the whole problem. Why did the relatives end up getting such a huge bill and be in such a situation?

The ways of the system

It is a lack of understanding about the ways of a corporate hospital that caused them to land themselves in such a situation. They did not really know the role of the Intensive Care Unit, why ICU care is given and when ICU care is to be given. Many people moan that it is the hospital that kept the patient in the ICU. Yes, hospitals do try to retain patients in the ICU. But it’s the relatives’ right and duty to decide whether they want to keep their patient in the ICU, especially when a patient is terminally ill.

Once the prognosis is known, most hospitals give the relatives the option to decide the further course of treatment, to take the patient home or keep the patient in the hospital. All patients in a hospital are to be kept alive and cured if possible: that is the aim of all hospitals and they will try to do it. And in the process make profit as well (which is not really an unpalatable aspect). Most corporate hospitals are not run for charity or free treatment but to make a profit and also to give good healthcare, and so they will try to increase bed occupancy and retain patients for longer periods. In the case of a terminally ill patient, the family is free to take the patient home. But, as many people don’t have the facilities to give good care at home, they prefer the hospital. Most people also cannot stand and watch their loved ones gasping for breath, groaning in pain, or lying in a pool of urine or vomitus and so want good care. And they mistakenly assume that an ICU is the place to do this. So they prefer to keep the patients in the ICU.

Thus, for the ‘best possible care’ the relatives (and the hospitals as well, to ensure bed occupancy) try to retain the patient in an ICU. Remember, no patient will be allowed to die of hunger, and no patient will be denied oxygen or medicines, if they are in the ICU. And all medications are continued even in a terminally hopeless cases and this adds to the cost of treatment. Nasal tube feeding, tracheostomy and ventilation are all different ways to ensure that a patient is comfortable in the ICU, as is preventing bedsores, cleaning up the patient after diarrhoea or spilling of urine or vomitus.

All these treatments cost large amounts of money. If the relatives want only nursing care (cleaning, etc.) they should arrange private nursing and have nurses assigned specifically to do these tasks, instead of occupying an ICU bed in a tertiary care centre, which is there to treat even hopeless cases, and if possible to draw them back to life from the brink of death.

Thus, who needs ICU care? A patient who has a good possibility of his problem being cured and can expect a good quality life after cure. Why do we need ICU care? Because sometimes only by intensive nursing care, highly potent medicines, ventilator support, hemodynamic support and constant monitoring of the vital parameters we can save a patient’s life. ICU care is not needed for terminally ill patients in whose case there is no hope for cure; such patients should not be in an ICU.

Blaming hospitals or doctors for enormous bills at the end of life after treatment in an ICU does not help anyone. An informed and aware relative is needed to prevent hospitals from taking advantage of one’s ignorance. 

The author is a Senior Consultant Neurosurgeon at a major hospital in Thiruvananthapuram. Email: thomavar@gmail.com

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Printable version | Jan 24, 2020 2:56:26 PM | https://www.thehindu.com/opinion/open-page/issues-of-end-of-life-care/article22267073.ece

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