Dignity in death

The painful decision of pulling a loved one off of life support and why we need legislation to guide us

If you query people about their greatest fear, chances of their own mortality or losing a loved one would rank very high on the list.

The subject of death and dying still remains fairly taboo in most conversations unless it's evoked in a religious or spiritual context. When we are pressed about the kind of death we would prefer, it is almost invariably dying in our homes, in our beds, surrounded by family and friends, or peacefully in our sleep. No one wishes to conjure up an image of tubes emanating from their mouth or nose, their organs artificially kept alive by a pulsating apparatus, in a soulless hospital room, referred to as the ICU.

Yet, the decision of placing someone on life support is sometimes a very real one. It can arise either after a protracted illness or a freak accident, the latter necessitating immediate care. Life support usually consists of a machine called a ventilator that aids artificial breathing, while doctors attempt to save the patient’s life or keep his/her vital signs stable. In more distressing times, the patient’s life is ebbing away and a decision has to made, usually by relatives, following the doctor’s opinion to place the patient on life support. It is a decision steeped in moral, ethical and legal implications.

Full disclosure; I, along with my family faced the agonising decision to place my father on life support a couple of years back. Time wasn’t a luxury in making the decision, as we were informed that if life support was not provided, death would occur in a matter of minutes. A million questions emerged. Will life support bring our father back? Will he be the same again? How long would he be on it?

As a lawyer, one is ostensibly trained to consider things slowly and deliberately, contemplating the pros and cons of each one. We found our doctors well-meaning, but reticent, and informed us that there was a likelihood of survival but no guarantees and placed the decision firmly in our hands. In the end, we collectively opted for life support, which ended in my father passing away, a few weeks after.

I learnt later that the doctor’s caginess in such matters is the norm rather than the exception.

Medical practitioners in Pakistan are generally evasive about discussing death or the implications of life support. Not unreasonably, the patient’s family and friends also skirt around the issue, not quite willing to accept the inevitable truism that life is finite and that their loved one is dying. Thus, the question lingers like a giant elephant in the room, metastasizing until it literally becomes an existential issue of life and death.

Eventually, a medical practitioner will pose the question whether the family will opt for life support. Note that the question will be posed to the family because the patient shall not, at that late stage, have the capacity to consent or withhold life support. There is also no concept in Pakistan of a Living Will, or a Power of Attorney, where prior instructions from the patient are delegated to an attorney to accept or refuse life support.

The decision is thus placed on relatives, who will invariably, bereft of any medical expertise, may make an emotional judgment out of love or guilt, and not deny life support, even when the medical advice states the contrary. All this time, the patient has no agency, even if he/she expressed a wish to eschew such treatment in the past, because our legal system does not recognise, or is tested to recognise and validate such lack of consent.

If life support is opted for, hospitals typically ask for an indemnity by the relatives’ where the right to sue in case of death or medical complications on a ventilator is waived off. The legal status of the indemnity/disclaimer is shrouded in mystery, but it is demanded so that the hospital is not held vicariously liable, for the actions of its doctors/employees.

A slow burn scenario then unfolds.

The patient can be on the ventilator for days, weeks or even months. The patient may get better or pass away on life support, but equally, his circumstances may not change, leading to a medical purgatory, where life exists in an artificial continuum, without any discernible improvement or deterioration in health.

Unsurprisingly, life support treatment is very expensive, costing north of Rs60,000 per day for use of a ventilator, inconceivable for those who lack privilege. Material possessions, including land are sold off to finance the cost of such treatment. To complicate matters further, the right of switching off life support does not exist in Pakistan. In other jurisdictions, if it is in the considered medical opinion of doctors that further treatment shall not have any utility, they can, with the relatives’ consent, discontinue life support.

In Pakistan, doctors invariably refuse to do this, citing Islamic and legal provisions as a bar on taking a life, even though there does not appear to be any legal provision validating this. The doctors’ fear is not unfounded. No one wants to voluntarily switch off life support and have legal proceedings initiated against them for murder or manslaughter.

What follows is a maelstrom of unending agony for the relatives. The patient is for all practical purposes, bereft of life. He cannot see his relatives nor hear them, cannot make voluntarily body movements, cannot even breathe on his own. His loved ones undergo an entire range of emotions from hope, to despair to finally praying for a quick, painless end, which may or may not come. When death does ensue, there is a pervasive feeling of helplessness, financial bankruptcy and depression.

There have been heart-breaking instances where relatives will abandon patients simply because they are unable to pay the debilitating cost of life support. In such instance’s hospitals have to make the decision of switching off life support themselves, lending credence to the fact that this legal vacuum needs to be filled.

How do other jurisdictions perceive the issue of life support?

The United Kingdom, to quote one example has rich legislative and judicial precedent in the protocols of offering or withdrawal life support, which is constantly developing. The Mental Capacity Act 2005, is one such legislation that allows for instances where a person is incapable of taking certain decisions due to injury or disease, which includes life support issues.

The laws in the UK also envisage the creation of a Living Will which is a document that instructs, amongst other things, the right to accept or refuse life support. The Living Will has to be respected by medical practitioners and courts alike, which is an unequivocal nod to individual autonomy. If there is no such document then such decision may be taken by doctors or authorised medical personnel under the Act, who are obligated to provide a considered medical opinion on whether life support should be taken or not, allowing loved ones to make an informed decision.

With respect to the withdrawal of life support, till 2018, patients in the UK had to file an application before a court of competent jurisdiction support if the patient was in a vegetative or a minimally conscious state. However, a Supreme Court judgment, of 2018, reported as NHS Trust vs Y, the Court held that such interventions were not necessary if doctors along with relatives were convinced that further treatment on life support would yield no benefit. Thus, the Court recognised that whilst the decision may be onerous, in certain situations, the best outcome is to trust the doctors and family’s institution and empower them in the process. A court intervention may still be sought if there is dispute amongst relatives or if there is no prior document instructing the acceptance or refusal of life support.

In Pakistan, there is little jurisprudence developed in this area. The closest guidelines regarding end of life are provided in the Pakistan Medical and Dental Council Code of Ethics for medical practitioners (the “Code”). The Code touches upon palliative care but does so in deeply ambiguous terms. For example, the Code decrees that “doctors need not provide “futile treatment” even if it is demanded and a treatment is considered qualitatively futile if it merely preserves permanent unconsciousness.” It follows that there is little scope for doctors providing enough information to relatives to make an informed decision whether life support may be useful or not.

Exacerbating the issue further is the lack of a legal framework for life support in Pakistan. It would be difficult to replicate the NHS vs Y decision in Pakistan because a Court approval would most likely also need to be backed with a religious proclamation/ fatwa on the validity of refusing life support. In an increasingly choked judicial system, expecting a trifecta of expert medical opinion, religious scholars and judges to come together and opine on an issue as sensitive as this may perhaps be a bridge too far.

Appropriate legislation, however, can introduce the concept of a Living Will, where a patient can provide a Living Will/Power of Attorney that gives instructions which have to be followed by the hospital and cannot be overridden by others. If this is recognised as an inalienable right by Courts, then it may go a long way in unlocking the complex dimensions of life support.

As always, sympathy for doctors here as well. Their core task is to preserve life. They have to grapple with fluctuating emotions and give an opinion that has ethical, legal and religious dimensions. One way to make life easier for them is for hospitals to develop SOPs to appraise the patient and their loved ones of the eventuality of life support and provide a generic template regarding what they may expect in case it is opted. This obviously may not cover all eventualities, but it will allow an informed decision. Sometimes that is all that a person needs.

For the ones, who have lost loved ones or are witnessing them in their last breaths, the words of Edna St Vincent Millay may provide comfort:

“Down down, down into the darkness of the grave

Gently they go, the beautiful, the tender the kind;

Quietly they go, the intelligent, the witty, the brave;

I know. But I do not approve. And I am not resigned”