There is always more we can do
By: Craig Dresang, CEO, YoloCares
At the end of every patient visit, YoloCares clinicians are trained to ask the patient/family a single question: “Is there anything more I can do for you? I have time.”
It is simple, almost trite, but the answer to this question can help clinicians address the issues that are most important to the patient. At its core, good hospice — or good healthcare for that matter — will align a patient’s values and goals with the care they receive. The only way a healthcare provider can truly understand and honor a patient’s wishes and values is by asking them. It is that straightforward.
Several years ago, the organization invested heavily in creating its own model of world-class care called The Perfect Visit. This unique approach incorporates the best clinical practices from top healthcare providers across the country with soft skills that go beyond acquired knowledge. Staff are expected to develop and rely on common sense and good communication. The Perfect Visit is a thoughtful, well-informed approach that shows how meaningful patient care requires equal measures of science, art, and spirit. Without any one of those ingredients, the other two will likely be less effective in terms of caring for the whole person. Every employee is mentored to emanate warmth at the bedside, master difficult personalities and uncommon or unusual circumstances, and maintain a positive flexible attitude.
Superior medical knowledge, as well as clinical expertise, are fundamental to managing a patient’s pain and symptoms. However, life-altering conditions such as cancer, heart or lung disease and neurological disorders present very real practical and emotional challenges that go beyond medical treatment. The organization’s approach to care is concentrated on easing pain, controlling symptoms and reducing the effects of illness so that a patient can focus on living. Every individual has unique needs, wishes and hopes. Therefore, a patient’s goals become the agency’s goals. The clinical team shapes the delivery of care to honor and support what matters most to each individual patient. The connection between dignity and a person’s will to live or die is profound and understanding that connection should be a call for all healthcare workers to reflect on ways to put dignity into practice each and every day.
Patient goals come in many shapes and forms. One patient wanted to make it to Point Reyes Beach one last time while they could still walk barefoot and feel the sand between their toes. Another woman wanted YoloCares to help her return to Mexico so that she could spend her final weeks and months in her childhood home, surrounded by family.
Frank, a Sacramento father diagnosed with ALS, knew there was one thing he wanted to do in the final weeks of his life: attend his son’s first football game of the year. Unfortunately, the game was being played three hours away. His nurse case manager was determined to not let distance stand in the way of his final wishes. Working with the volunteer department, she found a local pilot who was willing to fly Frank to where the game was being played. Other members of the care team secured special equipment to accommodate a safe and comfortable journey. After the game, Frank reunited with his son and the two shared an emotional once-in-a-lifetime embrace. Reflecting on the experience, Frank said it was hard to accurately capture his emotions. “There are no words to describe how this experience made me feel,” he said. “I was just so happy to see my son.”
When a now-retired YoloCares chaplain, Micah Murdock, asked one of his patients, “Is there anything else I can do for you? I have time.” he was not expecting the response he received. The patient, John Coleman of Vacaville,
turned to his longtime partner Delores and said, “Yes. You can marry us.” He told Murdock, “I’ve been asking her to marry me for 34 years. She kept saying no.” Now, it was his final wish.
Murdock kicked into action. He arranged for the marriage license, which required special steps because of Coleman’s illness. The YoloCares medical director signed the papers to say Coleman could not appear in person, and a volunteer notarized Coleman’s signature at home. Murdock took Delores to the marriage license office. “She kept saying she could not believe it was really happening,” he said. “She asked me if they would really give a marriage license to her.”
Fulfilling this goal for Coleman involved more than just the legal side of marriage. Delores wanted a traditional brightly colored dashiki dress to honor her African American heritage, but she did not have a vehicle or the means to go shopping. However, Murdock discovered a secondhand dress shop in Vacaville that carried this particular type of clothing. So, he took Delores shopping, and she found the perfect dress.
When they returned home, Coleman said, “Now I need a tuxedo. A man can’t get married without a tux.” Murdock responded, “I have just the outfit for you. Let me run home an get it.” Murdock returned with a tuxedo that he pulled out of his own closet and lent to Coleman for the special occasion. Another YoloCares volunteer provided flowers to match Delores’s dress, and yet another volunteer took photographs to create a beautiful wedding album. Someone else provided music, playing a portable piano and singing “At Last.” Murdock said, “The song was perfect. Everyone cried. It was a beautiful event. I think it gave the family a lot of peace.” Coleman died peacefully, and married, just a few days later.
This story, played out in real time, should have everyone asking the question, “What will be most important to me when I journey through my final days?” Having pain and symptoms managed, being comfortable, and feeling loved and not alone, are at the top of most people’s list. But beyond the obvious comfort-related goals, there are frequently other things that are meaningful and important to patients.
Some people want help in reconciling broken family relationships. Others hope to feel well enough to attend a special graduation or the birth of a grandbaby. I was once a volunteer for an 82-year-old woman who desperately wanted to walk through the doors of her favorite casino one more time to go gambling with friends. For another woman, in her mid-sixties and whose life was slipping away from stage four ovarian cancer, hospice made it possible for her to finally celebrate her bat mitzvah, the Jewish rite of passage that traditionally marks the transition from youth to adulthood.
Over the years, YoloCares has facilitated and witnessed the fulfillment of countless end-of-life wishes. When adding days to life may no longer be possible, adding life to days becomes the primary goal for YoloCares patients. Navigating a serious illness is never easy. Neither is the moment when someone feels nothing can be done. That is when it helps to have someone by your side, reminding you and your loved ones that there is more that can be done. That your life always matters.
This approach to care has helped land YoloCares’ quality scores in the top one percent of all providers in both California and the nation. Dr. Harvey Max Chochinov, distinguished professor of psychiatry at the University of Manitoba points out that healthcare workers who live by the Golden Rule, “Do unto others as you would have them do unto you,” assume that the patient wants to be treated the same way we would want to be treated under a similar situation. However, he calls out the ways that practicing the Golden Rule can lead care professionals astray. Instead, he suggests an alternative rule: A Platinum Rule that asks the patient, “How would you like to be treated?” Valuing what a patient has to say about their condition, and soliciting their input on how they would like to be treated or approached is a powerful way of respecting the patient as a person.
Modifying simple behaviors, along with a shift in perspective, can be a game-changer for the patient and how they perceive the quality of their care. For example, dignity-conserving behaviors captured in The Perfect Visit include:
· Maintaining contact and not avoiding engagement with, or making time for, the patient
· Being completely present and avoiding distractions
· Making eye contact and not looking away
· Sitting down next to the patient instead of standing
· Individualizing engagement with the patient instead of being generic or overly general
These straightforward actions are a way of really seeing the patient as an individual who holds value and meaning. The idea is that someone is more than their disease. Someone’s medical situation should not define them as a person.
Leave a Reply