When Maria’s father suffered a massive stroke, her family was thrust into crisis. As he lay unconscious in the ICU, the doctors asked about his wishes for life-sustaining treatment. Did he want to be placed on a ventilator? Would he want CPR if his heart stopped? What about a feeding tube? Maria and her siblings looked at each other helplessly. They had never discussed these questions with their father, and now they were forced to make life-altering decisions without knowing what he would have wanted.
“We were completely unprepared,” Maria recalls. “My brother thought Dad would want everything possible done to keep him alive. My sister believed he wouldn’t want to live with severe disabilities. I wasn’t sure. We argued at his bedside when we should have been supporting each other. I wouldn’t wish that experience on anyone.”
Maria’s story is all too common throughout the Wasatch Front and across the country. Many families find themselves making difficult medical decisions for loved ones without clear guidance. This is why having an end-of-life care plan is so vital—not just for yourself, but for those you love.
What is an End-of-Life Care Plan?
An end-of-life care plan, often formalized in documents called advance directives, outlines your preferences for medical care if you become unable to make decisions for yourself. This planning process involves reflecting on your values and wishes, discussing them with loved ones, and documenting them to guide future care decisions.
Research shows that you are more likely to receive the care you want if you have these conversations and put a plan in place. Having a clear plan may also help your loved ones feel less burden, guilt, and depression when making difficult decisions on your behalf.
Key Components of an End-of-Life Care Plan
Advance Directive
An advance directive is a legal document that provides instructions for your medical care if you cannot communicate. It typically includes:
- A living will that outlines your preferences for medical treatments in various scenarios
- A healthcare power of attorney that names a person to make medical decisions on your behalf
Healthcare Agent (or Proxy)
Choosing the right person to be your healthcare agent is crucial. This should be someone you trust to:
- Understand and respect your values and wishes
- Make decisions based on what you would want, not their own preferences
- Remain calm and clear-headed during difficult situations
- Advocate effectively with medical professionals
Specific Treatment Preferences
Your plan should address preferences for common end-of-life interventions, such as:
- Mechanical ventilation
- Artificial nutrition and hydration (feeding tubes)
- Comfort care measures
- Dialysis
- Antibiotics
- Organ and tissue donation
POLST Form
For those with serious illness or frailty, a POLST (Physician Orders for Life-Sustaining Treatment) form may be appropriate. This medical order, signed by a healthcare provider, gives specific instructions about certain medical treatments and is recognized by emergency personnel.
Why Having a Plan Matters
It Ensures Your Wishes Are Honored
Without written directives, healthcare providers may be obligated to use all available measures to prolong life, even if that’s not what you would want. Studies show that people often guess incorrectly about their loved one’s end-of-life preferences, with one study finding that surrogate decision-makers incorrectly guessed the end-of-life wishes of their loved ones in nearly one out of three cases.
It Relieves the Burden on Your Family
“One of the greatest gifts you can give your family is clarity about your wishes,” explains Dr. Martinez, a palliative care specialist at Inspiration Hospice. “I’ve seen how families struggle when they have to guess what their loved one would want. The guilt and uncertainty can be overwhelming. When there’s a clear plan in place, families can focus on supporting each other rather than agonizing over medical decisions.”
It Promotes Better Care
Healthcare professionals can provide more appropriate care when they understand your goals and values. This may lead to:
- Better symptom management
- Fewer unwanted hospitalizations
- More time spent in preferred settings (such as home)
- Greater alignment between care and personal values
It Can Reduce Healthcare Costs
End-of-life care can be extraordinarily expensive, particularly when it involves unwanted interventions or prolonged ICU stays. By specifying your preferences, you may be able to avoid treatments you wouldn’t want and help protect your family from financial hardship.
Starting the Conversation
Many people avoid discussing end-of-life care because it feels uncomfortable or seems premature. However, the best time to create a plan is before a crisis occurs, regardless of your age or health status.
Tips for Approaching the Conversation:
- Start with your own values and what matters most to you
- Use conversation starters like “I need your help with something important” or “I was thinking about what happened to [friend/relative], and it made me realize…”
- Listen carefully to concerns and questions
- Remember that this is an ongoing conversation, not a one-time discussion
Paul, a 72-year-old retired teacher from Bountiful, approached it this way: “I told my kids that I was doing some important planning and needed their input. I explained that I wanted to make sure they wouldn’t have to guess what I would want if I couldn’t speak for myself. It was a bit uncomfortable at first, but once we got talking, it was actually a meaningful conversation about what matters most to me.”
Creating Your Plan
Step 1: Reflect on Your Values
Before completing any documents, take time to consider:
- What gives your life meaning and joy?
- What conditions would make life not worth living for you?
- How do you feel about trading quality of life for length of life?
- What role do spiritual or religious beliefs play in your decisions?
Step 2: Choose Your Healthcare Agent
Select someone who meets these criteria:
- Willing to serve in this role
- Able to understand medical information
- Capable of making decisions under stress
- Likely to be available when needed
- Willing to advocate for your wishes, even if others disagree
Step 3: Document Your Wishes
Utah, like other states, has specific forms for advance directives. These can be obtained from:
- Healthcare providers
- Inspiration Hospice
- Utah Legal Services
- The Utah Medical Association
- Online resources
Step 4: Share Your Plan
Once your documents are completed:
- Give copies to your healthcare agent and alternate agents
- Share with your primary care provider and specialists
- Discuss with close family members
- Keep an easily accessible copy at home
- Consider carrying a wallet card with key information
Step 5: Review Regularly
End-of-life care plans should be reviewed:
- After major life changes (marriage, divorce, death of a designated agent)
- With significant health changes
- When moving to a new state
- Every few years, even if nothing has changed
How Inspiration Hospice Can Help
At Inspiration Hospice, we believe that everyone deserves care that honors their unique values and wishes at the end of life. Our team can assist with:
- Facilitating conversations about end-of-life preferences
- Providing advance directive forms and assistance with completion
- Educating families about treatment options and their implications
- Supporting healthcare agents in understanding their role
- Ensuring that documented wishes are followed in hospice care
After her father’s death, Maria worked with Inspiration Hospice to create her own advance directives. “The process was actually empowering,” she says. “Now my family won’t have to guess what I would want, and I have peace of mind knowing that my wishes will be respected. I’ve also made sure my mother has completed her advance directives so we don’t face another crisis without guidance.”
Creating an end-of-life care plan is one of the most important steps you can take to ensure you receive the care you want and to support your loved ones during difficult times. It’s never too early to begin this process.
For more information or assistance with advance care planning, contact Inspiration Hospice at (385) 247-2020 or visit www.inspirationhospice.com. Our compassionate team is here to help you navigate this important process with confidence and peace of mind.