Advanced care planning for caregivers
If the COVID-19 pandemic has taught us anything, it’s that life can change at any moment, with life-threatening accidents, emergencies, or illnesses. It’s crucial to have a plan in place if we are not able to communicate our wishes for our own medical care as well as any loved ones we care for.
Who makes important health care decisions in the event a person is on life support, unconscious and unable to communicate, or has a chronic condition like dementia and is confused? Usually, it is a spouse or adult child, and if families can’t reach a decision or no one steps forward, a surrogate will be assigned by the court system. Having no plan can cause upheaval in families and confusion in medical care decision making. In many instances, family members may not know or agree on what their loved one may want regarding end-of-life decisions. Whether it’s for you, a parent, or an adult you care for, a plan can be developed with a process for medical decision making called advanced care planning or advanced directives.
Advanced care planning is an ongoing process of planning for future medical care in the event a person is unable to make their decisions. This plan can be put in place for anyone over the age of 18 and for caregivers, the goal is to start this process while the patient is still able to speak for themselves. Advanced care planning includes exploring a loved one’s desires about their end-of-life wishes, creating a plan, signing legal documents, reviewing the plan on a regular schedule (usually annually), and making any updates as needed.
Creating a Plan
The planning phase for end-of-life wishes involves the individual, the family, and the health care provider. The first step is to explore a loved one’s preferences regarding life-sustaining procedures at the end of life. This is a time for discussion on personal values and wishes on life-supporting measures including mechanical ventilation, dialysis, nutrition and hydration, comfort, pain, blood transfusions, organ donation, and do not resuscitate orders. This is also a time to discuss who will be assigned as the health care representative and can make medical decisions on the patient’s behalf.
Farrah Hughes, clinical psychologist and Associate Vice President of Behavioral Health at HopeHealth, provides a helpful suggestion for the planning stage. “Approaching the topic of advanced care planning can be emotionally challenging, and even overwhelming. One useful tool for guiding these conversations is the Five Wishes document (online at fivewishes.org). It provides an easy-to-use framework to help make the process less stressful for everyone. It is never too early to begin planning, and using a tool like the Five Wishes can help caregivers feel more comfortable about initiating these discussions.”
A discussion of your loved one’s wishes with their health care provider is covered by Medicare at the annual wellness visit. Other insurances cover this benefit as well, so check with your insurance provider.
Completing Legal Documents
Once decisions have been made, it’s time to put these wishes into a legal form to have on-hand when the time comes. Every state has their own laws and in South Carolina, there are two legal documents needed for advanced directives:
Durable Power of Attorney for Health Care – This document gives one or two designated people the authority to make health care decisions on behalf of the patient and act as a health care representative. There is a separate durable power of attorney for finance issues.
Living Will – The Death with Dignity Act authorizes competent individuals to express their wishes on the use or withholding of life-sustaining procedures. The living will is a legal document explaining these wishes and ensuring health care teams honor patients’ wishes regarding life-sustaining procedures. The document does not take effect until the patient’s attending physician determines the patient is no longer capable of making health care decisions.
For the above to be considered legally binding, they must be official documents and must be signed, witnessed, and notarized. The South Carolina Bar Association at scbar.org provides online examples of living wills and also discusses how to overturn the process at any time.
Families can use an attorney to provide and complete these documents. If finances are an issue in hiring an attorney, there is governmental assistance available for seniors. Find out more at aging.sc.gov/programs-initiatives.
Once the forms are completed, make sure to keep the originals in a safe place and make copies for yourself, the patient’s health care provider, and other designated family members. If a person is hospitalized, a copy of these forms will be needed for their medical chart.
Annual Review of the Plan
It’s important to review these directives annually to make sure they are up-to-date with your loved one’s wishes and any advances in medicine or health changes.
Advanced care planning and the legal documentation of advanced directives can bring comfort to the patient and their family members and is an important step for all of us to ensure our wishes are carried out by our loved ones.
