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“The problem is not our situation but our perception of our situation.” — Graham Cooke
It was the third attempt to access an intravenous line this week for Ms. Sue (name changed to maintain confidentiality). She had stopped eating and drinking a week earlier, secondary to her cerebrovascular accident sequelae and progressive dysphagia. Providers, including the nursing team, could clearly see that she was entering into her terminal stage of life. Her husband (who was also the power of attorney) was adamant about continuing IV hydration. Ms. Sue had been receiving IV hydration on and off for the previous four weeks. After I finished seeing the patient, the nurse turned around and asked me, “Doctor! Can you help him understand that these 20 milliliters of intravenous fluid will not save his wife’s life?” I could sense disappointment and frustration in her tone, as if she was looking for a better direction.
The complexities of initiating and navigating advance care planning discussions require a combination of art and science. As Rebecca L. Sudore, MD, and colleagues of a multidisciplinary Delphi panel on advance care planning noted, “Advance Care Planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care” (J Pain Symptom Manage 2017;53:669–681). Of course, post-acute and long-term care facilities face many challenges, which can become roadblocks for some providers and an impediment to practicing effective advance care planning for others. Limited resources and time constraints are a few of the many barriers. Despite these barriers, a successful provider–patient relationship can exist.
The four ethical principles of autonomy, beneficence, nonmaleficence, and justice should always be a part of any advance care planning discussion. As providers in PALTC settings, it is worth adding the fifth ethical principle of “respect for the person,” especially if autonomy is compromised by aging. Respecting the full person means recognizing where a person comes from. Providers and the team should explore the intrinsic values that stem from a patient’s perception — their cultural, spiritual, and personal belief systems. This respectful patient–provider relationship is part of the person-centered care approach. When used during advance care planning conversations, the person-centered care approach acts as an important and necessary bridge between the personal and technical poles of informed care planning (Figure 1).
In an interview with The Guardian, physician, psychologist, and thinker Edward de Bono stated, “Studies have shown that 90% of error in thinking is due to error in perception. If you can change your perception, you can change your emotion, and this can lead to new ideas” (April 23, 2007, https://bit.ly/3OjsUrs). Part of changing our perception with respect to cultural diversity in advance care planning is to start with open-ended questions and to have an open, honest, and empathetic conversation. This includes sharing one’s own ignorance in terms of diversity awareness, and sharing one’s own uncertainties in terms of disease progression despite all of one’s knowledge and skill set. Committing to understanding culturally specific health and illness belief systems will permit us to be better advocates for our patients, especially during ongoing advance care planning discussions.
Our empathetic listening to Ms. Sue’s husband helped us to better understand Ms. Sue’s functional, physical, mental, psychological, spiritual, social, and personal values. She had come from Vietnam and had faced post-traumatic stress disorder after the Vietnam War. She and her husband had moved to America almost 50 years ago, and they had a well-accomplished life. Her husband informed us that he had faced many challenges during the Vietnam War, including suffering from thirst, hunger, life-threatening events, and fear of the unknown. He stated that he understood that she would transition to the next life, but he could not fathom the idea that she would die thirsty. He felt this was the only thing he could do to assist her in alleviating her sufferings.
The presence of the entire interdisciplinary team was very helpful during advance care planning discussions because this helped all the team members understand Ms. Sue and her husband’s past traumatic experiences and their impact on her care planning. Afterward the team kept a close eye on Ms. Sue to ensure that she remained comfortable and pain-free. The nursing team monitored the IV site regularly for unwanted side effects, including local swelling and edema around the IV line. It became easier for the staff to run those 20 milliliters of normal saline, which only lasted for another 48 hours. She passed away peacefully, leaving behind her grieving yet contented husband, and deeply satisfied staff members.
Dr. Naqvi is a Hospice Medical Director and MOLST Master Trainer at Holy Cross Home Care and Hospice.