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“A problem is a chance for you to do your best.” ― Duke Ellington

A hospice nurse who was interviewed for this piece said in relation to the concept of delivering care to patient on their terms and not the care clinicians think is best, “if the patient is non-compliant it means we have the wrong plan of care.”

Take the example of Tony, a single man in his late 60’s with terminal lung cancer and a smoker.

Tony will not quit smoking. He has smoked since he was a young teen and for whatever reason will not quit. Tony has in fact explicitly stated, “I’m not going to quit now.”

Faced with this information the hospice nurse is faced with two different types of care plans they can create for Tony to help with his breathing and suggested interventions such as:

Plan of Care A:

  • Working with the patient to find nicotine alternatives
  • Educate patient and family about smoking cessation programs
  • Work with family/facility to prevent patient from purchasing/obtaining cigarettes.

Plan of Care B: 

  • Encourage patient to try using warm drinks and cough drops to relieve cough.
  • Educate patient on dangers of oxygen and smoking
  • Develop alternatives to improve breathing such as: tripod positioning, pursed lip breathing, fan positioning

Delivering hospice care that recognizes and respects patient autonomy means providing your best advice, but delivering care that is in sync with the patient’s wishes, not your clinical guidance.

Tips To Developing Patient Driven Decision Making

Tip #1. Embrace Freedom

Freedom is not just the theoretical ability to make one’s own decisions, but the freedom to make decisions without pressure or manipulation. Freedom with Intentionality, patient’s decision making capability equals informed consent.

The ability to grant informed consent is the ethical hallmark of the American healthcare system. Today, and throughout history, many systems around the world do not and have not valued informed consent. Tragically, not embracing freedom, delivering care without informed consent,  has created volumes of horrific events. Cultivating a mindset of freedom means conquering the need for control and recognizing fear.

As a hospice clinician it might be as well-intentioned as fearing a bad outcome if the patient does not accept your guidance and a desire to control the outcome for the patient’s benefit. However, patient autonomy requires you to adjust to the patient’s desired outcome, not an academic outcome based on clinical guidelines.

Going back to our example above with Tony the smoker. Tony’s version of a comfortable death means enjoying smoking until he passes regardless of the trouble breathing and painful coughing fits. While a clinician’s view of the most benefit to the patient and the best outcome for Tony’s benefit would be to get him to stop smoking. His breathing would improve, his coughing fits may lessen, it may even extend his life. But that outcome is not his primary want.

Cultivating that freedom mindset means recognizing that you’ve presented the options and recommendations as impartially as you can, and then adopting the patient’s posture as wholeheartedly as you would have had the patient chosen your recommendation.

When a patient makes their choice, take a beat. Pause before you respond. Do not react in the moment peppering your patient with multiple variations of “are you sure?” and an increasingly frustrated tone. Allow yourself to digest their decision before responding. It’s OK to confirm the decision and ask for clarification. It’s not OK to browbeat a patient into a plan of care for which they will be non-compliant.

Tip #2. Recognize Patient’s Multiple Identities

Patients as individuals have autonomy but patient’s identities are not limited to their individuality. Patients are often part of a family unit and have an identity within that structure. Respecting a patient’s autonomy also means respecting their decision to have family members provide input or make decisions for them, even when they still have the agency to make their own decisions.

For example, your hospice liaison may meet with a patient at their hospital bedside who has a terminal diagnosis. When meeting the patient alone the patient expresses how worn out and tired they are. “I just want to go home.” “I don’t want anymore treatment.” However, when the patient’s spouse/child/partner/family member arrives they are vocally objecting to hospice. “My dad isn’t ready to give up ” they say. Or they say, “My mom is just worn out from this latest stint in the hospital and is depressed but really, they’re not ready for hospice.”

Do you wait for the family member to leave and then try to get the patient to sign? Do you schedule a follow up meeting for when the patient is at home? Do you thank them for their time, wish them the best and then leave? It’s important to remember that individuals have an identity as part of a family and have the right, and often the desire, to have family members take over decision making.

However, patient’s families can cross the line as well and put undue pressure on their loved one – whether through emotional pressure or by threatening to withdraw care-giving support or financial support to manipulate their loved one to acquiesce to the decision they feel is best.

It is your job as a hospice practitioner to be aware of these dynamics and discern whether autonomy within a family structure means the patient wants their family to make decisions, even when counter to thoughts they’ve expressed, or if the family members are making decisions that are violating the patient’s autonomy.

If you’re unsure, ask a social worker or chaplain or someone trained in these types of family dynamics to to get involved.

Tip #3. There’s No Right or Wrong Way To Die

Hospice as a Philosophy is about making the the dying process as comfortable as possible. What that looks like can vary wildly from patient to patient. You may have seen hundreds of lung cancer patients, but that doesn’t mean their decisions and view of what comfort and dying looks like matches what comfort and dying looks like to Tony, our fictional lung cancer patient from above. Judging others is not about the clinical facts or healthcare guidelines for a plan of care. Your reaction to other people’s behavior or choices is most often reflective of your own feelings and perhaps what comfort and dying look like to you.

Recognize that your judgment is an expression of your own autonomy, your own desire for freedom and agency. Don’t allow your judgment to replace a patient’s autonomy with your own.

Practicing these skills and developing a mindset of patient driven care will create better outcomes for patients.

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