As a physician assistant for 25 years, I’ve worked in a variety of settings and with patients of all ages. The one constant has been my passion for making sure I align my patients’ care with their individual values and wishes.
In fact, it was that focus that eventually led me from the ER into nursing homes, where I became known for my “rainbow” talks – deep conversations with patients and families about the different phases of life, disease trajectories, and – most importantly – how the patients want to live out their final days.
Most residents come into nursing homes with advance care directives, powers of attorney, living wills and other instructions about what type of medical care they want in the future or who can make decisions on their behalf.
Advance care planning takes those medical instructions to a deeper, more spiritual level. It’s more about a patient’s values, desires and wishes. But understanding what’s important to each individual requires difficult and ongoing communication.
Starting the conversation
Getting started is often the hardest part.
When I begin advance care planning talks, I always say life is like a rainbow. When you come into this world, someone is caring for you. And going through your teens and 20s, you’re unstoppable. Then in your 30s or 40s you start thinking about what happens if you pass. Then, you start experiencing loss and thinking more about your own death. And at the end of the rainbow, you revert to people taking care of you and people helping you make your decisions.
It’s also important to begin advance care planning discussions with open-ended questions, such as:
- What do you hope for the most for the next few months?
- What do you expect to happen in the future?
- Time is a gift. How would you want to use the time that you have left?
Those questions really help pull out information about how patients want to be treated. And it helps them put into perspective the fact that their journey is natural.
From there, it’s easier to ask the hard questions about how much intervention or hospitalization a resident might want as their disease progresses so that a personalized care plan can be developed that matches their values and goals.
Get the family involved – steps to a quality advance care planning conversation
Ideally, the conversations include as many family members as possible.
A key first step is building trust, which, of course, means telling the truth. I like to start by asking the family for permission to be honest, telling them, “You may not like what I have to tell you, but I promise to be as honest with the information that I have today.”
From there, we train our clinicians to follow these nine steps for quality advance care planning discussions with our nursing home members:
- Hold an open dialogue. Ask open-ended questions about values, medical conditions, beliefs and the patient and family’s perception of the situation.
- State observations. Explain what you observe medically and psychologically and what end-of-life decisions may need to be made now and in the future.
- Explain your role. Discuss your role as a provider, and explain that you are the first contact for the nursing facility when issues arise.
- Determine patient wishes. Continue to probe what the patient wants, reinforce that their wishes direct their care and that all treatment is optional.
- Define goals of care. Paraphrase the patient’s wishes for goals of care. Document patient comments and explain that surrogate decision-making should be based on the patient’s wishes and values, not the family’s.
- Explain comfort care. Explain what options are available for acute clinical conditions such as pain, fever, hunger, thirst, anxiety and respiratory distress.
- Discuss comfort care vs. life-prolonging medical care. Talk about the benefits and burden of treatment options such as hospitalization and feeding tubes and how they may or may not meet patient goals.
- Summarize and document decisions. Clarify the patient’s final decision, and make it clear that it will be documented in their medical record and shared with all their care teams.
- Communicate. There is no such thing as overcommunication, particularly when it comes to memory care. Establish a follow-up time for continued discussion. Provide counseling and emotional support for patients and their families.
Although most nursing residents are nearing the end of their life, advance care planning in senior care – and across medicine generally – is often lagging.
That’s why we should all be looking for opportunities to have better and ongoing dialogue with residents about how to handle both the expected and the unexpected before there is a crisis. Because when done right, advance care planning is key to delivering compassionate, personalized care that meets each individual’s – and their family’s – goals.
Terry Wihlen, MBA, RPA-C, is a Regional VP of Clinical Operations within Optum Home and Community Care pillar, Senior Community Care. Senior Community Care provides a clinical program for our elders who live in Nursing Homes and Assisted Living residences across the US.
The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.
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