Tips for families facing end-of-life care

Talking about end-of-life is morbid and depressing, right? As a hospice social worker for the past 15 years, I find helping people talk about end-of-life empowering, touching and spiritually connecting. The reality is, life is unpredictable and death can happen to any of us at any time. I believe this is why people struggle with talking about end-of-life decisions.

Here are a few things to think about in regard to end-of-life decisions:

Start the conversation early. Waiting until someone has been diagnosed with a terminal condition, or has been in a life-threatening accident, is too late. End-of-life decisions need to be a thoughtful, inclusive process. They should include everything from what medical treatments your loved one — and you — want, to how they feel about life support. Unfortunately, someone will make decisions for you if you are unable to speak for yourself; and that  burden could be placed upon your loved ones if your wishes are unknown. 

Get it in writing. It's a true gift to your loved ones to let them know how to care for you when you are not able to speak for yourself. Less than two years after my father's passing, my 60-year-old mother entered a coma from a rare brain disease. My mom, who was an excellent hospice nurse, was prepared in case something like this were to happen.

Some medical recommendations are: 

• Health care directive (living will/advance directive): This records a person's wish for medical treatment if he or she are unable to make those decisions. It should be shared with their loved ones and agent.
• Agent (proxy/durable power of attorney for health care): This is someone designated to make health care decisions when a person can no longer do so. This person should be someone who is comfortable with having to make those tough decisions.
• Physician orders for life-sustaining treatment (POLST) form: This form contains details of what the patient wants in terms of medical treatment including CPR, feeding tubes and medical intervention if the person is without a pulse or is not breathing.

My mother's wishes involved limited interventions, and it was an exceedingly difficult time because none of us wanted to follow those wishes. Well before getting ill, she had made it clear what was important to her and what it meant to her to really be living. 

Involve your primary care provider. Our task was made especially challenging when the doctor questioned our decision to decline certain procedures. Involving your primary care provider early will allow them to understand your wishes and can help alleviate tension when treatment options are discussed.

By the way, my mom lived! In her lifetime, she has been struck by lightning, survived an Amtrak train crash and a rare brain disease. To say she is lucky is an understatement.

I encourage everyone to start an end-of-life conversation. I know it isn't an easy discussion, but for those you love, it's one of the kindest things you can do. 

Each of us is unique, so take the path that best fits you and those you love. I wish you the very best in this wild ride we call life.