End of life treatment, who decides?

Feb 07, 2025

From the other side- Regina William
“God heals, we help.” This tagline of a hospital in Penang will forever stay with me, as it was the place where my late husband passed away in 1994. I can still vividly recall the physician asking me what I wanted for him during his final days, after he had been battling cancer for two months.

As his immediate family member, I was presented with three choices: to take him home to be surrounded by family, to keep him comfortable at the hospital, or to prolong his life for a few more days or weeks in the intensive care unit.

He was in no condition to make that decision, so I made it for him. I couldn’t bear to have my young children witness his passing at home. And I knew that the last thing he would have wanted was to be kept alive by machines for a few extra days.

So, I chose to keep him comfortable at the hospital, staying by his side until he took his last breath.

Recently, a close family friend in the US, who is also battling a terminal illness, was told by the medical team at a world-renowned cancer hospital that there was nothing more they could do for him. He was offered end-of-life care.

Although he is not bedridden and is still able to walk, talk, and make decisions about his healthcare, all he and his family requested was nutritional support, as he was unable to consume food orally.

However, they were informed that providing nutrition to prolong the life of someone who has exhausted various treatments was considered “unethical.”

When a terminally ill patient expresses a desire for nutrition, but doctors refuse to provide it, what is the solution? The situation quickly becomes both ethically and legally complex. The question of whether terminally ill patients should be denied nutrition is a deeply nuanced one, dependent on various factors, including the patient’s condition, their potential to benefit from nutrition, and the wishes of the patient or their family.

A fundamental ethical principle in health care, which I believe is universally important, is patient autonomy — the right of patients to make informed decisions about their own care. If a terminally ill patient expresses a desire for nutrition, especially in cases where they are conscious and able to make decisions, their wishes should be respected, unless there are compelling reasons not to do so.

When a patient insists on receiving nutrition, an ethical tension arises between respecting the patient’s autonomy and ensuring their well-being, which might involve withholding treatment if it’s considered futile or harmful. In some cases, doctors may feel that honouring a patient’s wishes in this scenario could lead to unnecessary suffering or prolong life without quality, which may be viewed as ethically problematic.

However, if a patient fully understands the risks and benefits and still chooses to pursue nutrition, the principle of informed consent suggests that their decision should be respected.

In terminally ill patients, the focus often shifts to palliative care, which prioritises comfort and quality of life rather than attempting to cure the illness. If a patient insists on nutrition, but medical professionals believe it will cause harm, palliative care specialists may step in to manage pain, provide psychological support, and offer alternatives for comfort.

In the US, the issue of withholding nutrition from terminally ill individuals is primarily governed by a combination of medical ethics, state laws, and court rulings. It is a complex issue that often intersects with patient autonomy, family wishes, and the role of healthcare providers.

While there is no federal law that directly addresses the withholding of nutrition in terminally ill patients, the legal aspects vary from state to state. Some states have specific laws or court cases that address end-of-life care, and these laws often align with the principles of patient autonomy, informed consent, and the right to refuse treatment.

From an ethical standpoint, many argue that withholding nutrition and hydration is a form of allowing a natural death, rather than actively causing death. This is a highly debated issue, and the decision is typically made by the patient, their family, and the healthcare team, often in a palliative care or hospice setting.

If a terminally ill patient has made it clear, either through an advance directive or direct communication, that they do not wish to receive life-sustaining treatments, withholding nutrition is generally considered ethically appropriate. In situations where the patient cannot communicate (such as in a coma or with advanced dementia), family members or a healthcare proxy may make decisions on their behalf, ideally in line with the patient’s known wishes.

Different cultures and religions have varying perspectives on end-of-life decisions. For example, some religious traditions may advocate for the continuation of nutrition and hydration as long as possible, viewing the withholding of such care as ethically unacceptable. Others may allow for the cessation of life-sustaining treatments if it aligns with the patient’s wishes or the belief that suffering should not be prolonged.

The Catholic Church teaches that life is sacred and that every person has intrinsic dignity, regardless of their health condition. This includes the responsibility to care for the sick and suffering.

Catholic teaching emphasises the importance of intent and proportionality in health care decisions. The key principle is that the goal is not to hasten death but to alleviate suffering and respect the natural process of dying.

The Church encourages family members to make decisions with compassion and in consultation with health care providers, ensuring that the patient’s dignity and wellbeing are respected. In cases where a patient is unable to communicate their wishes, the decision may be made by family members or a designated health care proxy, ideally based on the patient’s known values and preferences.

Left with no options here in the US and unwilling to give up, the family friend is currently seeking treatment in another country in Asia, where the doctors are providing him with the nutrition he needs and also treating him with an alternative plan to fight the disease.

(Regina William is an ex journalist turned head of communications, now full-time grandmother to three children aged between six and two, crisscrossing the globe to play the role. She can be reached at [email protected])

— The views expressed are entirely the writer’s own.