In many parts of the world, people understand the natural cycle of life and death. In America, it seems to be the opposite. Everyone expects immortality because of the vast scientific advances and research being done. It’s almost as if people feel entitled to living forever at any cost. But this way of thinking needs to start changing if we ever hope to live meaningful lives so that we can have peaceful deaths.
Over the past few years, I have had countless difficult conversations with patients and their families regarding end of life care. Of course, the obvious difficulty with these situations is trying to help a patient come to terms with a terminal illness (does anyone ever really come to terms with that, though?) and to offer options, reassuring patients that “There’s nothing more we can do” is absolutely false and frankly insensitive. These conversations have led to some of the most meaningful moments of my career, and guiding patients in these difficult decisions kindled my passion for promoting hospice and palliative care services. I hope to one day transition into this field of medicine, but that is another story for another time.
I am truly grateful for the privilege to have had these experiences, and it often seems surreal that I broach these deep, private, moments with patients after knowing them for such a short amount of time. Given that I only do inpatient medicine in the hospital, I don’t develop long-term relationships with my patients the way an outpatient primary care provider would do. I’m lucky if I have these conversations with patients after knowing them for a week, but at times it is within a matter of minutes from meeting them. This can be unsettling for the patient, for we have not had the chance to develop any rapport before I’m asking about their thoughts and opinions about dying. Nonetheless, it is a crucial topic we need to discuss with every patient, for we would never want to do something to a patient that they never intended on going through.
What’s difficult is that most people have never even thought about what they would want to do in such circumstances. When I ask patients if they would want to be resuscitated (i.e. CPR, defibrillation, intubation) if their heart suddenly stopped beating or they stopped breathing, the most common answer is something along the lines of, “Do everything you can, but not if I’m going to be a vegetable.” I then explain that in that moment, it is an emergency and we can never predict what the outcome is. The default is to do “everything,” to be aggressive, with the hope of saving their life. But of course in some circumstances, the patient does not improve and then is unable to make their own decision, and we are left with the family members to make a decision for them.
It is more often the case that a person does not have a living will or advanced directive, stating who they want to make healthcare decisions for them and what their wishes would be if they could not make their own decisions. It seems few and far between when I get a patient who does have it in writing. Sometimes patients know exactly what they want, other times patients are unsure but have someone in mind to make the decision if they cannot. And other times, there is a legal healthcare power of attorney in place that is the most unfortunate choice for the patient and everyone who tries to treat/help the patient. I can count on one hand the number of instances in which I have had to deal with an extremely challenging and abrasive family member in end of life situations, and it has reinforced a number of crucial points about dealing with death and dying.
– formulate an advanced directive and living will, especially if you are married and/or have children
– name a healthcare power of attorney (HCPOA) — someone you trust to make medical decisions for you in the event you were unable to make them for yourself (i.e. if you were in a coma, medically induced or otherwise, had advanced dementia, etc.)
– make sure your HCPOA knows what YOUR wishes are. If you don’t want to be kept on life support for an extended period of time if there was no hope of recovery, tell them that. More importantly, put it in your living will.
– think about what your wishes would be for yourself.
– consider that quantity of life does not always mean quality of life.
– remember that there is a difference between your cells and tissues being artificially kept alive and living
– immortality is not natural
– it’s totally acceptable and your right to ask for second opinions if you are not sure about your disease process or prognosis. However, it is not acceptable to refute what multiple experts are telling you because your friend’s friend’s spouse’s cousin gave you contradicting advice. Or the internet tells you something you want to hear.
– make your loved one suffer because you want to keep them around for a little while longer.
– only consider your expectations and desires instead of those of the patient
– think that God will take your family member when God sees fit if your family member is on life support (e.g. mechanical ventilation, hemodialysis). God cannot take your family member when it is their natural time to go if we are forced to artificially intervene with these measures.
– prolong your loved one’s suffering because you believe a miracle will happen
– forget that everyone dies at some point. Being able to choose whether that death is peaceful, pain free, and surrounded by loved ones over a death that is brutal and surrounded by strangers in a hospital is a gift.
– think that CPR is gentle like it seems on TV. We can break ribs with the force of CPR (since the point is to manually pump the heart)
– feel guilty for letting your loved one go if the prognosis is poor and if the possible treatments would cause more harm than good
These are not decisions that can be made overnight. They require a lot of talking, thinking, and planning, but it is better to do so early than at the last minute when the situation is critical. Now is the time to start the conversation.
6 Comments Add yours
Thank you for this. It can be hard to think of one’s own mortality let alone that of the people we love. I remember when my grandmother died I was so surprised when it happened even though she was so sick- I just couldn’t fathom in my mind that she could possibly be gone. But you are so right, these are things we have to look at- especially when there are people in our lives that we care about who will remain and deal with our passing.
Exactly!! Thanks for your comment. It is hard to talk about, and to think about, but so important.
LikeLiked by 1 person
All of this is so true! I have been especially frustrated in the past during these conversations when a family member insists that God can turn off the ventilator (or that he can make the power go out AND make the back up generator fail AND then the back up back up generator) if it is time – this is how terminally ill patients end up in a SNF on a ventilator for years.
I’m just going to direct my patients to this page :)
Oh my goodness…that is an especially tough one. Thanks for reading chica!
Thank you for putting this out there. I went through this with both of my parents at far too young of an age (for both myself and for them). I encourage everyone to be prepared NOW — not in the midst of dealing with medical care/cancer/stroke/heart attack/etc. It is refreshing to hear your gentle and encouraging point of view.
Thank you for your insight and comments! I’m sorry you had such a difficult time. This legal stuff really adds a lot of stress in an already stressful time.