One of the most difficult situations most of us go through and will go through is the sickness and the death of our parents and other loved ones. As we start living longer and as medical advancements make disease more amenable to treatment, dying has become problematic, both for the ‘caregivers’ as well as for the person confronting death or advanced disease. That death is inevitable is obvious but children don’t want their parents to die and in most circumstances neither do the parents.
There are of course certain medical situations where an early death is unavoidable. Terminal cancer, brain problems like a major stroke producing severe mental and physical disability or conditions like advanced Alzheimer’s disease are obviously not curable. The only purpose of medical treatment in such conditions is to make a person as comfortable as possible during the last months and days of their life. In most advanced countries ‘hospice’ care designed to ease this time of a person’s life either at home or in a special centre designed for terminally sick patients is available. That of course requires that both the patient if aware enough and the family agree that no medical intervention is expected. Sadly, such formal hospice care is not available in Pakistan as yet even for those that can afford it.
There are many medical conditions that have a very poor outlook. By poor outlook I don’t just mean the chance of dying shortly. More important than imminent death is the possibility that with major medical interventions life can be prolonged but only for a short time and with much suffering. It is this aspect of the end of life scenario that is most difficult for the patient and the family to handle.
In a situation like this, the question from the patient but more often from the family is: “doctor can you do something?” This question is extremely hard to answer truthfully. The correct answer is often; yes, with such and such treatment there is a small chance that we can prolong life but it will be painful and possibly ineffective. Unfortunately, with such an answer the only thing the family or the patient hears is what they want to hear and that is ‘we can prolong life’.
Prolongation of life near the end is often costly, painful for the patient and indeed for the family but even so some patients and most families will indeed want everything that is possible done to delay the inevitable. The worst is when if the patient were aware, he or she might want to stop further treatment but being too sick, it is often the family that wants to keep on going till all possible treatments have failed.
In a country like the United States where almost all old people are insured by the government, the large amount of money spent to ineffectively prolong life at the very end is a major burden on the national ‘exchequer’. Most importantly this diverts funds from those that need financial help to get medical treatment but do not have the capacity to pay for such treatment.
In Pakistan, this is not a major problem since there is no ‘official’ system of health insurance for the poor or the elderly. The rich obviously do not worry about the financial burden of such treatments while the poor and much of the middle class just bring their sick relatives home to die after being told by the doctors and the hospitals that ‘nothing more’ can be done. What is left unsaid is that doing anything more is too costly for you, and we at the hospital do not have the capacity to provide advanced care without some upfront cash. However, interestingly the poor and the not so rich often save their sick relatives a lot of pain and suffering by letting them die without major and often unsuccessful interventions. And more importantly, for a person to die at home and among his or her loved ones is definitely the way to go if possible.
This article is by necessity meant for those that have the time and the intellectual and financial capacity to worry and do something about impending death. There are three areas that should be thought about all of us that have aging relatives, have loved ones that have severe and possibly incurable medical problems and those that are themselves getting older. It might seem that the situations I have mentioned are dissimilar but in fact the planning for the end in all three is about the same. And no, I am not going to discuss any preparations for what happens after death since that is essentially beyond my area of medical expertise.
A recent development is that old people’s insurance in the US now actually pays doctors for an office visit by the very sick or the old to plan for the end of life issues. The first issue that must be determined is that of the ‘surrogate’. This is the person that will make all the medical decisions on behalf of the sick person especially if and when the time comes that the sick person is no longer in a position to make medical decisions. This happens often when a person becomes mentally impaired due to severe medical problems or often after major surgery. Such a surrogate must be appointed with the agreement of the legal ‘next of kin’.
The other step is to create what is called a ‘living will’. What this means is to declare that if a person is brought to the hospital in a very sick condition and if the medical outlook is not very good, then extraordinary measures may not be taken to keep the person alive. This includes being placed on life support or in layman’s terms depending on breathing machines, kidney dialysis or other technology to prolong life. Even though a surrogate has been appointed that could make these decisions, it is possible that during a medical emergency such a surrogate might not be immediately available.
The third and in my opinion the most important step is a frank and open discussion between the family, the treating physician that must, if possible, include the ‘very’ sick person. Treatments available and chances of success as well as side effects and possible complications should be discussed. A typical example is incurable cancer. Many types of treatments like chemo and radiotherapy are available that might prolong life for a few months but at the cost of considerable pain and suffering to the patient. The patient in these situations must be given the option to refuse such treatment.
Readers might have noticed that I do not mention a particular age beyond which a person is declared to be old. A seventy-year old obese man with diabetes, high blood pressure, kidney problems and heart disease who has already had a bypass operation is functionally much older than a spry eighty-year old man without any of those conditions. So, I want to stress that age by itself is an important but not the major determining factor when it comes to end of life planning.