Often a patient-advocate has to transcend artificial boundaries to counsel her clients in an objective, value-free manner
Because a doctor-patient relationship is so personal, intimate and special, it often raises a number of ethical dilemmas. One major controversial issue, a discussion of which often raises more heat than light is: how do we define death?
Liberals argue that physicians and family members must respect a critically-ill patient’s personal decision to forego life-sustaining treatment (“life-sustaining treatment” implies the use of mechanical ventilation, renal dialysis, chemotherapy, antibiotics, artificial nutrition and hydration). Unfortunately, in medical practice, there is no ethical distinction between withdrawing (stopping once it has been started) and withholding (never starting) life-sustaining treatment - while in real life, there is a world of a difference between an act of commission (do we start life support?) and an act of omission (do we discontinue the life support the patient is already on?).
A competent, adult patient may, in advance, formulate and provide valid consent to withholding or gradually withdrawing life-support systems, but if these advance directives are not available, then a patient advocate should be able to counsel the patient’s family in reaching the right decision that serves the best interests of the patient. Patients should also be able to appoint surrogate decision-makers who can make decisions on their behalf, in case they are not able to, in accordance with the prevailing law.
Patients do not automatically lose the right to refuse life-sustaining treatment merely because they are medically unable to make such decisions for themselves. Authorised persons can be legally allowed to make treatment decisions for them. In every country, including India, the law recognises a hierarchy of surrogate decision-makers who can be relied upon to take crucial decisions related to a patient’s treatment, on the patient’s behalf. Physicians, in turn, have the responsibility to make a “reasonable inquiry” as to whether the patient has a legal guardian,
or if someone else (such as a patient-advocate) has the power of attorney over end-of-life healthcare decisions.
This kind of a decision-making is often vested in:
The patient’s legal guardian
The patient’s spouse
An adult son or daughter
An adult brother or sister
An adult grandchild
A close friend
The guardian appointed by the estate
If there are multiple surrogate decision-makers present, they may be asked to reach a consensus on behalf of the patient. If there is conflict among them, this will need to be resolved. Though the surrogate’s decision for the incompetent patient should almost always be honoured by the doctor, there can be four exceptions to this rule:
There is no available family member willing to be the patient’s surrogate decision-maker;
There is a dispute among family members on what decision to take
There is sufficient reason for the doctor to suspect that the family’s decision is clearly not what the patient would have decided if she were competent; and
If the doctor suspects that the decision is not in the patient’s best interests
Let’s take the following illustrative case:
Kartar Singh (82) is the patriarch of a large Sikh family. He suffered haemorrhagic stroke two months ago that left him paralysed and in a partially vegetative state, unable to communicate in any meaningful way. His families’, including his daughters and granddaughters began to care for him at home and have been feeding him by mouth for the entire duration of his illness. Last week however, his condition deteriorated and he is now having difficulties swallowing.
Dr Abdul Rehman, his physician for the past eight years, suspects that his patient may have had cerebral bleeding that worsened his condition. He is concerned that Singh may choke on food or aspirate, causing a chest infection, which would further complicate matters for the patient. Dr Rehman discusses the case with Singh’s daughters. They want to continue caring for their father at home including feeding him by mouth and looking after his nutrition and hydration needs, if that is at all possible. They are also convinced that their father would have expressed the same wish, had he been able to communicate. The family is extremely concerned that if he goes back into the hospital, he may not come back home alive.
After careful discussion of the case with the family, during which Singh’s eldest daughter acts as his primary patient-advocate, it is agreed that for the time being the patient would continue with the care delivered at home. However, just as the doctor suspected, two weeks later, Singh has to be rushed to the hospital with a chest infection caused by aspiration of food into his lungs. He is treated with IV antibiotics and a drip is inserted to provide hydration and stabalises his condition. A CT head scan also confirms progressive cerebral bleeding.
The family is struggling to come to terms with their father’s condition. They are unprepared for this eventuality, so the well-meaning doctor arranges for a third party advocate, a Sikh priest to come and speak with the family, and explain to them what might happen if they insist on taking the patient home in this critical condition.
On the sixth day, Singh dies peacefully in the intensive care unit of the hospital, surrounded by his loving family members. The family feels indebted to the priest and the doctor’s team, who extended them just the kind of direction and moral support they needed in their time of need.
A trusted, wise and respected member of society can often be called in to play this role at the last minute. Religious leaders, in whom the family reposes full trust, deal with such challenging situations, almost on a daily basis. However, rather than having to run around to hunt for a patient advocate at the last minute, it’s much better to appoint one well in advance, so that the family can bond and establish a relationship with her.
The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.