Have you thought about what you'd want if you were in a medical crisis and you weren't able to speak for yourself? More importantly, have you created a plan to share your wishes with your loved ones?
At St. Joseph Health, our caregivers witness difficult and heartbreaking situations involving patients who are unable to communicate after suffering a medical catastrophe and grieving family members who must make difficult end-of-life decisions. This profound responsibility can weigh heavily on the hearts and minds of family members, particularly if they don't know whether their decisions are based on their loved one's wishes.
Thursday, April 16, is National Healthcare Decisions Day, a day dedicated to reiterating the importance of planning for a time when you may not be able to communicate your own medical preferences.
Detailing what you'd want – and what you wouldn't want – helps your physicians, family members and friends honor your wishes in case of an accident, the late stages of a chronic disease, or the natural consequences of serious illness or aging. Thinking about this, having the conversation and planning for this is called advance care planning.
"For some people, talking about end-of-life wishes may be uncomfortable and upsetting," said Brian Boyd, MD, co-medical director for the
Pain and Palliative Care Consulting Service at St. Joseph Hospital, Orange. "But talking about the kind of care you'd want if you were unable to speak for yourself and having a plan in place is actually a gift for your family; it takes the burden off your loved ones and alleviates angst they may feel when they have to make difficult decisions because they know they are carrying out the decisions you asked them to make."
An advance directive is a legal document that outlines your decisions. It can include a living will, which indicates whether you want specific medical interventions, and a durable power of attorney for health care. A durable power of attorney allows you to designate someone you trust to make health care decisions for you if you are unable to. This doesn't cost anything and the forms don't require an attorney. The forms are available for free online; all you'll need is two people to witness signing of the document.
Dr. Boyd says any healthy adult 18 and older should consider a written advance directive.
"Palliative care used to be exclusively focused on giving people dignity in the dying process while controlling their pain. But as life support technologies and treatments have become more sophisticated, palliative care has expanded to include discussions and planning with patients so they are empowered to make decisions about care at all stages of life," he said.
A national survey found that more than 90 percent of people thought talking to loved ones about end-of-life care is important. But only 27 percent had had that conversation. Another study found that more than 80 percent of Californians said it was important to have end-of-life wishes in writing, but fewer than a quarter had those plans in place.
Dr. Boyd recommends starting the advance care planning process by focusing on what he calls two key "bookend" questions.
"When faced with the prospect of perhaps surgery or chemotherapy, one should first ask, 'What's my minimal acceptable outcome?' For some, lying on the sofa watching TV all day is just great; other people might not be happy unless they can run a marathon in under 3 ½ hours. The other thing to consider is 'What's my maximum acceptable burden?' (to achieve this minimal acceptable outcome?) For some, losing half their body weight and all their hair is fine; other people don't even want an IV. There are no right or wrong answers. It is only what is right for you."
Other questions to consider are:
- What concerns you most about death or dying?
- How would you want to spend the last month of your life?
- If you were in the final stages of life, what treatment would you want? What would you not want?
- Which treatment options support your values? Which ones undermine your values?
- Who should make decisions for you if you weren't able to speak for yourself?
- What's important to you? Is it important for you to die at home? Would you want spiritual support? Do you want your family with you?
Once you have thought about these questions, the next steps are to tell someone and pick someone you trust who will make decisions on your behalf if you're unable to.
Dr. Boyd says people may want to consider a POLST (Physician Orders for Life Sustaining Treatment) to ensure their wishes are carried out. This legal document, signed by your doctor, must be honored whether you are at home with the paramedics, in the hospital, or even in the nursing home.
"I encourage everyone to start having these conversations," Dr. Boyd said. "It can save a lot of heartache and you'll know you've done what you can to take the burden off your family."
For more information about Dr. Boyd, please click here. For more information about palliative care services at St. Joseph Hospital, Orange, please click