Too many dying patients have been kept alive, and then sent off to live in institutions-- connected to machines by catheters, their arms often tied down so as to prevent dislodgment of the tubes keeping them alive. They cannot eat or speak, and usually live in a state of delirium or confusion, writes Dr. Jessica Nutik Zitter (ICU & Palliative Care Physician, Author of ‘Extreme Measures: Finding a Better Path to the End of Life’) in her blog.
She shares five things she learned from caring for the dying, which can make more good deaths possible:
1. Think about what is really important.
What if cure is not an option? How might you live the best possible life right up until the very end? Some questions to ask yourself about your final days:
Where do you want to be?
Who do you want to have at your side?
What do you want to tell them before you go?
How do you feel about being on life support, like breathing machines, dialysis, or a feeding tube?
How important is it that you are able to communicate, to eat on your own, to wash your own face?
2. Make Sure You’ve Done Your Homework
In order to ensure that these carefully thought out and very personal preferences are honored, it is critical that some preparation be done. This should include communicating with those you love about this difficult subject. Many people believe talking to their parents about death is cruel. And if the parent initiates this conversation, they might protest, “You’re not going to die!” or plug their ears. But to be sure preferences are honored, they must first be shared. Ideally, this is a process conducted over years of reflection, rather than decisions made in harried moments of chaos and anxiety.
Simultaneously, you need to document these preferences, and pick a person whom you trust to ensure they are presented to the healthcare team and carried out. Tools to document include an Advance Directive, which allows you to legally identify the person you’d like to make decisions for you if you are unable to do so yourself. It also allows you to provide general guidance on your attitude toward the use of life-prolonging technologies in the event that you have a serious illness or injury.
A Physician Order for Life Sustaining Treatment (POLST) is another important tool that you might find helpful. It is an official doctor’s order that indicates exactly which technologies would and would not be acceptable to you. The difference between this and an Advance Directive is that the POLST, being a physician order, legally obligates any first medical responder (EMT, Paramedic, ER physician) to carry out your wishes.
3. Don’t Chase Fantasies
When dying is a possibility, be open to hearing the truth from your doctor. Ask yourself whether you want to know what your doctor is really thinking. Would you prefer to just hear good news? You are much more likely to learn the truth if you invite the physician to give you her honest opinion, even if it includes bad news. Be sure to state explicitly that you want to know her view of the prognosis, even if she isn’t 100% certain.
If doctors don’t feel you can handle or want the truth, they will be less likely to tell you. When patients do learn the truth, they tend to make vastly different choices than would be made for them by default.
4. Demand a Seat at the Table
The patient is the expert on the patient. And when the patient can’t speak for herself, the loved ones are the experts. Be sure to step into your role and remember that the healthcare team needs your input to create the best plan of care, even when they aren’t acting like it.
5. Get Support for Yourself and Your Loved Ones.
It is important that you get both the emotional as well as the logistical support that you need at this key time of life.
There are many kinds of deaths, those that have been peaceful, even joyful when patients and their families have done the work of facing and preparing for death. They have summoned the courage to speak honestly with each other and their doctors.