One of the toughest conversations I have with patients who seek my guidance to help them as they grapple with terminal cancer is whether they should continue treatment despite the odds almost completely stacked against them.
For me, the conversation always broadens to then ask the patient what exactly they are looking to achieve by continuing the treatment and understanding the rationale behind it.
More than half of the time, it turns out they are not the ones in the driver's seat and they are making decisions that have been put forward by their doctors, their loved ones and/or by the internet.
Why die in a hospital gown? Why die with tubes attached everywhere and a monitor detecting every breath?
While my first response is always to empower the patient, I know that at this stage in their medical life, this can be an incredible challenge. Especially in India, often class, gender, age, education and finances are big obstacles that restrict the abilities of the patient.
One part of my regular conversation with patients and their families is about end of life care. And almost always, there is a question about how and where to die. The idea of passing away at home feels defeatist for many, especially given the fact that there's little acceptance of impending death despite knowledge of the severity of the disease.
To simplify why NOT the hospital, I've put forward eight 'F'-ing reasons why a cancer patient deserves to choose where they wish to die and why almost always home is best.
Money doesn't come easy to most. End of life care is expensive and there is no guaranteed end date. As a result, long-term hospitalisation is costly and there are very few hospices in India that provide reasonable alternatives for patients.
For a patient who is in the process of death, it's important to be as comfortable and informed as possible. Being in a familiar place with familiar people, sounds, spaces—these are factors that permit patients to stay calm and also feel secure. Whether they wish to continue to battle the disease for as long as their bodies can or they wish to close their eyes permanently, being in a familiar place offers the "comfort blanket" we all generally wish for at the end.
One of the toughest things to witness with a loved one is their body shutting down and the lack of need for food and water. At hospitals, when patients are unable to swallow or consume regular amounts of food, they are often given nutrients and hydration through feeding tubes. While the quality of life does not really change for patients, it's more of a show for the family. At home, because there is no way to feed the patient, it expedites the natural process of death and enables families to see the body shutting down rather than waiting in limbo looking for other signs.
Hospitals often have restrictions on the amount of people that can stay with the patient. In addition, because it is not their home, accommodations for families, friends and other visitors becomes a challenge; visits also have time limits. The fear attached of not being there in the hospital at the right time when the patient is dying can cause anxiety and actually further isolate the patient from the bond they had with people and places that matter to them.
Hospitals have a tendency to focus on the micro. Death is a macro process where acceptance only comes when the understanding is that it's the only left outcome. For families, this is very hard to accept but when in a hospital setting, becomes even more out of focus because any natural symptom displayed by the patient becomes a potential medical decision to make. The focus on the death becomes secondary to life preservation—contrary to what is actually happening.
Some of the most peaceful deaths I've witnessed have taken place with chanting, meditation, devotional songs etc. being played live or recorded. Hospitals often do not offer the space or setup to bring faith in the room. At home, whether it's a kirtan or simply a holy man visiting—sometimes, the peace that the patient wants based on their own faith is possible. In addition, witnessing the spiritual angle to death by loved ones can offer moral support that otherwise is absent from the hospital setting.
Why die in a hospital gown? Why die with tubes attached everywhere and a monitor detecting every breath? None of us come into the world tied to any devices, so should we go out that way? Should science or reality be the decision maker for our time of death? Most terminal patients I know would never wish to be attached to life support and almost all patients I know wish to be unattached at the time of death. Freedom to die naturally is a right every patient deserves to get. It's a decision they must be able to make for themselves.
Death will happen but it is not guaranteed within which time frame. I have seen relatively healthy cancer patients take a turn for the worse and not last more than a few hours while others have taken weeks or even months to finish the process of death. Some are waiting for their bodies to stop while others are waiting for some outside agent, whether it be a loved one, a date or even possibly their own "letting go" process and acceptance of death to happen. As a result, the hospital can never "finish" the job—that only can be done by the patient. Without medical intervention, the patients themselves decide the timing much more directly.
The prevalent belief in India that hospitalisation will somehow prevent an impending death is flat out wrong.
There will always be reasons to justify hospitalisation. The most frequent reason I hear is that the family and loved ones are ill prepared and scared that they will not able to offer relief from the pain that patients often suffer during this process. However, it is for this very reason that patients and their families should feel comfortable to have conversations freely with their doctors about end-of-life prior to this actually happening.
Beyond that, the prevalent belief in India that hospitalisation will somehow prevent an impending death is flat out wrong. At the end of day, saying you spent xx amount of money to save the patient means nothing to the patient. Engaging ill-informed bystanders and presenting them with evidence that you did everything possible are just distractions from where the focus should be at this time.
I have deep admiration for doctors and hospitals. I have the same amount of admiration for patients and their loved ones. It's time we went back to respecting our roles and accepting end of life in the way we are supposed to rather than making it into a business where no amount of engagement will result in a different outcome.
Death is not something we like to discuss, but it's the one thing we must talk about at the right time before it's too late and we don't get what we want. Let's start the 'F'-ing dialogue now.