Three weeks ago, I held the hand of a patient as she died in the intensive care unit. She passed after the ICU team withdrew life support. I am left with the thoughts that before she passed, I was not sure of what her final wishes were before she had to be hospitalized. Did she want to be on a machine to help her breathe? Did she want to have chemicals help her heart beat? Unfortunately, because our medical visits had been focused on her diabetes, her hypertension or her back pain, we had not addressed her end of life care wishes. I had to talk with her son to find out whether she would have wanted to be on a machine to help her breathe or chemicals to help her heart beat. This process or substituted judgment is one way to respect the end of life wishes of someone that we love. A provider will speak with a designated person to talk for someone who is unable to speak for themselves because they are delirious or unconscious and therefore cannot agree or refuse potential lifesaving treatment. This designated person can speak for the person that is incapacitated, but should use that person’s wishes or beliefs about whether that person would want life sustaining treatment, not their own wishes or beliefs.
It is important to start contemplating what your wishes will be for end of life care before you are unable to communicate them. It is also important that your wishes become documented and discussed with your loved ones, and your health care providers. It is a difficult topic as we, myself included, do not like to think about our own mortality. However, it is as important to discuss this health care topic as it is to discuss diabetes, hypertension etc. First, we need to understand some terms. Once we understand the terms in this article, I will talk about their application in end of life care in November’s article.
Reflect- think. What type of care do you want if you are stricken with a disease or an attack and you are unable to think for yourself? Do you want someone to perform CPR and do chest compressions? Do you want medications that can help your heart beat, or speed or slow your heart rate if your heart is beating dangerously? If you stop breathing or you cannot protect your airway, do you want to have a tube placed down your throat and air and pressure to simulate breathing so you can continue? If not then you should fill out a DNR/DNI ( do not resuscitate/do not intubate) form otherwise known as a “living will”. Your living will should be accessible in your home and with your health care provider. This is one way to keep your wishes respected and not have paramedics or health care facilities try to resuscitate you.
Other items to be included in your living will: whether you want to have antibiotics; whether you want to receive nutrition either through a feeding tube or intravenously; and whether you want to be transferred to the hospital from your home. All of these items should be in your living will. You can revoke or modify your living will at any time. Perhaps, you want to be resuscitated but not intubated, or you want to have treatment for a short time period. These are your wishes.
You can’t think of everything, or possible list everything as well. You need an advocate or an agent…. someone who knows your end of life wishes and will respect them. This agent is formally known as a” durable power of attorney for health care.” The “DPA” is a person ( family member, trusted friend, or someone you trust) who will be formally named in the DPA forms, who knows of your living will and your wishes and has been appointed by you to make health care decisions when you cannot. This DPA is specifically for health care decisions not financial decisions, there is a different DPA for this type of support. It is important for you to keep your DPA informed of any changes in your living will. It is important to have someone as your DPA that will respect your decisions, even if they would do something different if they were in the same situation.
So what happens if you have a living will and you are admitted to the hospital? How does this change from becoming your wishes to becoming a medical order that the facility follows? How does your DPA make sure that your wishes are enforced? Where is your doctor in all of this? This will be discussed in part 2, next month.