In the Medical ICU, medical students are part of a team that manages patients with serious and complex medical problems, including learning how to have difficult conversations with patients and their loved ones. There are frequent family meetings to discuss patient prognoses, recovery timelines, and goals of care. The team aims to do everything that the patient would want, be it everything, nothing, or something in between.
This is where issues can occur – healthcare providers and family members may be unaware of the patient’s wishes and the actions taken on behalf of a patient.
Triathletes, runners, and cyclists are fit and healthy individuals who expect to live for many more years. Unfortunately though, accidents happen, and the unexpected can force family members to make difficult decisions about the care of a loved one.
During my time in the ICU, I have seen families struggle with making these decisions. The stress of making a life-changing decision for someone else is very difficult. These decisions can be made much less difficult if the patient has a very clear written living will that allows the family members to make decisions in accordance with the patient’s wishes. In the situations I’ve seen, families derive a great deal of comfort from knowing that the decisions they are making reflect what the patient would want in that situation, even if the patient cannot advocate for him/herself at the time.
I encourage you to have a conversation with your loved ones about what you want if you are not able to make medical decisions for yourself. Do you want a breathing tube? Do you want to be on life support? If so, for how long? Do you want a feeding tube? Do you want CPR done? This is called a living will, and it helps your loved ones and physicians make the decisions you would want. Having a succinct and clear written living will also decreases disagreement among family members.
Another important designation to make is your power of attorney, also known as healthcare proxy. The appointed person will make the medical decisions for you if you are incapacitated. If no power of attorney has been established, there is a set order created by your state of who will be responsible for making healthcare decisions for you. Some states also limit how far their decision-making power goes. In contrast, a healthcare proxy can make all of your medical decisions, including end-of-life care. It is important to have this in writing (links for forms and more information at the bottom of the post) because you may not be able to share your wishes due to stroke, severe injury, neurological status, etc.
As an example, because I am healthy, I would want CPR done. I want everything done that can be done for me. If I need life support, I will give it 7 days. If I do not start to improve after 7 days, I want to be taken off life support. Why 7 days? It seems like a solid number – enough time for my body to heal some and make some progress, but not that long of a time on a ventilator. As I grow and change, my living will will also change. I expect at some point to not want any heroic measures done. The good thing about a living will is that it can be updated by the creator to meet the changes in his/her life.
Below are good resources for how to establish a living will, designate a power of attorney for when the need arises, and how to have this important conversation with family members. Most hospitals, nursing homes, and home health agencies are also required by federal law to provide information about and the necessary forms for living wills and power of attorney.
The Mayo Clinic – The basics on living wills and different methods of resuscitation
National Hospice and Palliative Care Organization – Advance Care Planning – Good resource on how to talk to family members, your state’s requirements for advance directives, and how to prepare one.
National Caregivers Library – Good resource for everything about power of attorney.
American Bar Association – Good resource from the lawyer perspective. If you scroll about half-way down, there is a box called “Featured Resources.” These PDFs are very good resources for the patient and the proxy, and also includes financial guidance information.