We’re all going to go through it. It’s a certainty. As a physician, I’ve come to recognize the limitations of medicine, that none of us are meant to live forever. We’re all going to have to say goodbye at some point.
More times than I care to remember, I’ve had to talk to families whose loved ones were lying there, unresponsive… Hooked to a ventilator, a tube in their mouth for air, a tube in their nose for feeding, eyes shut or open but staring blankly. The sound of life support beeping, whirring and hissing in the background. You never really get used to it.
Truth is, despite technological advances, medicine still has limitations. If you think that medicine is meant to keep us around forever — it’s just not. And as much as the mission of doctors is to save lives, it is also our objective to ease suffering. In these difficult moments, a doctor considers the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, we must try to focus instead on accepting death.
Unfortunately, and all too often, I find families unprepared to deal with death, as their loved ones lie in this twilight purgatory, waiting, perhaps suffering, having lost all their power to have any effect on the world or their place in it, much less to try and voice out their wishes. The family is unprepared, it’s not really something they ever discussed, not something they ever considered. But now it’s here, staring them in the face.
It’s not a surprise that we’re loathe to confront this. It’s not in our culture to discuss death. This perhaps ties into our dysfunctional romance with technology, against accepting ourselves as mortal. If only it were that easy.
There is no “one-size-fits-all” approach. End-of-life care is fraught with uncertainty, guilt and suboptimal communication. As a nephrologist, I’ve had to deal with addressing life-threatening and terminal conditions and have had to participate in those uncomfortable discussions about death in its varied contexts. What I’ve learned is that the medical profession can and must do a better job in guiding patients towards what some might call a “good death,” where suffering is alleviated and dignity preserved.
It’s a fact that terminally ill patients who request that physicians make their decisions for them might get more aggressive end-of-life treatment. And although some physicians are very comfortable taking over this type of decision making, it may mean that patients don’t receive the kind of care they really want at that stage. It is at this point where critical care can become hypocritical. And as a result, patients end up in the intensive care unit or the emergency room days before death, even though most would rather die peacefully at home.
Attitudes of the physicians, the patient and their families influence end-of-life care. In reality, we all have a right to decide our own fate. And yet in my last 12 years of practice, it remains uncommon for me to find a terminally ill or advanced elderly patient who’s had this frank discussion with their family and has decidedly prepared for this unfortunate inevitability. What happens then is that the burden of deciding our fate falls on our family, whose unyielding love and devotion becomes easily clouded by guilt and false hope.
Another barrier to delivering adequate end-of-life care is the culture of rescue and litigation now surrounding the healthcare space. I’m sure more than a few of doctors here and around the country have, at one time or another, consciously or unconsciously, pushed for more aggressive therapy even when it is no longer appropriate. And although I am sure that the greater majority of physicians still frequently try to dissuade patients and families from insisting upon invasive measures when their hopes for cure are unrealistic, it still happens. As those of us who do not acquiesce to certain requests or demands, no matter how unreasonable, become fearful of the threat of lawsuits and litigation.
Talk about palliative care sometimes can leave patients and families feeling like the medical team is “giving up” on them. And though it may seem that way, nothing could be a further from the truth. There is no perfect time for this discussion. Progression to end-stage disease is rarely linear and can be challenging to predict. It would serve us all (physicians, patients and their families) well to remember the Latin phrase “primum non nocere,” or “first, do no harm.” Non-maleficence, derived from this maxim, is one of the principal precepts of bioethics that medical students are taught. Another way to say it is that, “given an existing problem, it may be better not to do something, or even do nothing, than to risk causing more harm than good.”
It always seems too soon, until it’s too late. Whatever your opinion may be on end-of-life decisions, the question is always one of control — and who is going to have it over our body in its last moments. Why leave the burden of this choice to someone else? You know yourself best. Everyone else can only guess. Leaving these choices to your family puts them in a precarious position. One where they are asked to make vital decisions for you while being in the most stressful environment imaginable. Facing the harsh reality of our mortality can be painful enough, saying goodbye to a loved one, even more so.
So take time to reflect and make your wishes known. Caring for a loved one or parent at the end of life is easier if you’ve planned for it. Talk to your family, involve your doctor. Because although we all see ourselves dying in old age, it’s healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved ones. In a way, you’ve helped them cope with at least some of the changes they may face after you’re gone.