Significant Conversations: What, Why, When, How

What

In this article, we describe our experience and suggestions with what are now being called “significant conversations.”(1) Many clinicians have experienced difficult clinical care situations when care options are limited, either at the time of initial diagnosis of a significant illness or after treatment options are exhausted. Recently, two published studies have shown that having “goals of care” conversations with patients may reduce their anxiety while providing the opportunity for earlier and better detailed documentation in the electronic health record about patient’s wishes.(2,3) These conversations may include, but are not limited to, discussing end-of-life care, treatments for significant illness, pain management, use of technology to maintain life, and hospitalization or home care. Being sure a patient understands their condition is essential for them to make decisions. Moreover, hearing a patient’s wishes is crucial to helping them live the life they want to. We as organization leaders should provide education and training on how to have these conversations and a convenient, efficient process for documenting these discussions.

Why

It is important for families to talk in advance about their wishes in the event of a significant illness, so all are informed and aware. Knowing the person’s wishes contributes to the well-being of family members and aids in meeting the individual’s goals of care. Clergy and nurses have repeatedly told us from their experiences that when the family has talked in advance, and each member understands and accepts the patient’s wishes, significant healthcare experiences are smoother for all.

Nurses have an especially hard time when patients and families have not had these care planning discussions. Nurses work hard each day using their compassion, professionalism, and nursing skills, while also communicating with everyone involved—patients, families, and physicians alike. As physicians and hospital leaders, we often hear from nurses how difficult it is to provide care when the treatments and procedures being administered bring discomfort to their patients, yet will likely do little or nothing to prolong their lives. The nurses talk with us and look to our leadership to create a culture of patient-centered cohesive hospital care, to make these significant healthcare events easier for patients and their families, as well as the affected and involved healthcare providers. Two examples follow.

My (RG) brothers, our mother, and our wives huddle outside room 780. Our children are with our father in the hospital room. It is 7 PM, and the hospital floor is quiet. We are all near tears but able to talk and share with each other. I, as the oldest and as one of the doctors in our family, lead off, saying, “I know Dad is very ill and dying.” I am filled with sadness. I bring up the discussion our family had together two years ago when our mother and father told us their wishes and intentions concerning the ends of their lives. Everyone remembers. Some of us cry. We know he would not want further treatment for his major stroke and acute leukemia. We know he does not want any machines used to forestall his death. We know he does not want to linger and be a burden to anyone. We all know that he is at peace with himself and all of us. Each brother speaks in support of his own decision and a plan. Our mother speaks last. She is strong and clear. She says, “Let’s do what he wanted. Let’s do what he told us to do.”

Two years later, it is 6 PM on the 8th floor. My wife, our oldest daughter, a nephew, and I tell my mother we are going out to get dinner and will be back in an hour or so. It is the night of the 2016 Democratic Convention, and my mother has been watching it all from the start. We are back in time to see the keynote address, the nomination, and the balloons. My mother is ecstatic with the nomination of her heroine, Hilary Rodham Clinton. We leave to go home, and she is pumping her arms and cheering “Hilary! Hilary!”

Just a few hours later, at 3 AM, I am awakened by a call. It is a call I myself have made too many times, and it is never easy. “Hello, Dr. Goldszer, this is Dr. A,” says the voice on the phone. “Your mother has suffered a cardiac arrest and is being moved to the ICU. She has a pulse, very low blood pressure, and is not responsive.” I have experienced different responses to this type of call from family members through the years, so I think about how best to respond to the physician making this call. I say, “Thank you for your help. Thank you for letting me know. I will let others in the family know, and we will be there shortly. What ICU is she going to?” Then I cry. I roll over and wake my wife. We hug and cry together.

My mother does not become responsive again. She is ventilator-dependent. Once again, my two brother and our wives huddle in the hallway outside a hospital room. We all remember our discussion with our mother, when she told us clearly what she wanted. We reflect on our father’s death and the comfort that came from knowing for certain what our parents’ wishes were, and that we were to follow them at this time in their lives.

We had said good-bye twice. We took comfort knowing we had helped our parents. We had known their wishes, and we implemented exactly what they wanted. Why was this possible? Why does this not happen with some families and physicians? My family is fortunate that our parents were educated, were aware of the options available for the last parts of their lives, and were good communicators. They had talked with us about what they wanted. Their physicians had had conversations about their goals of care with each of them. They both had implemented a living will and appointed medical surrogates. My brothers and I are also well-educated, and we listened to each other and our parents.

On the other side of end-of-life care planning, we have physicians and families who do not want to face the reality of death. The idea that we must “do everything possible” is hard to escape. No matter how much we talk with patients and families about how certain treatments will not help significantly prolong life, about not intubating, not placing feeding tubes, not starting dialysis, not doing cardiac resuscitation, and allowing natural death, some families continue to push, sometimes quite hard and even aggressively. These are the hardest situations because everyone is sad, angry, and frustrated, all for different reasons.

When

Any time that is right for the patient, family, and clinicians to have these significant conversations is acceptable. Adequate time needs to be allocated. While teaching medical students and residents, we discussed my “Thanksgiving Conversation,” occurring after the meal when all our family is gathered together. Our rabbi also recently urged us to have these conversations at the end of major holiday meals when all family members are congregated. It is a difficult discussion to have, and there are often tears. However, when the end of life comes to any of us and it is important for others to know what we are feeling, we can be secure in the knowledge that we have made those wishes heard.

Some physicians are not comfortable with the idea of allowing natural death. This may be due to their personal and religious beliefs, personal experiences, or fears. Most commonly they say, “I do not want to show no hope for the patient.” Or they may say, “I do not want anyone to believe I have given up.” Some are afraid they will not have other patients referred by the family or colleagues. Some physicians are concerned they will be sued for malpractice if they do not offer every possible option.

How

Make it a point to hear from patients directly, when they are still capable of communicating their own wishes. Many tools are available to help us have these significant conversations.

Families should decide on the best times for them to have their conversations. It is helpful when as many of the family are present as possible.

Documenting these discussions for the benefit of everyone on the care team is important.

Multidisciplinary patient-focused discussions are the cornerstone. They provide insight from all members of our care teams. They allow for support from colleagues for what are often difficult decisions and conversations. Input from nurses is essential—they are experienced with spending time with patients and families. Their nursing intuition is now even being incorporated into risk assessments in the electronic health record.(4) Multidisciplinary rounds on clinical units and ethics committees also are examples of teams that provide helpful analysis and education. Clergy can often be very helpful, especially when patients are given a major diagnosis, or in helping nurses and physicians learn how to talk compassionately with patients and families during major life events.

Schwartz Rounds, provided by the Schwartz Center, are supportive and educational for caregivers.(5) Many physicians and nurses who have participated have become better at talking with patients and listening to their wishes. The Conversation Project(6) has developed tools and education to stimulate and help all to have these conversations.

Documenting these discussions for the benefit of everyone on the care team is important. At our hospital, we have worked with our IT team to have two tools available in our electronic health record. Both tools utilize our state’s Physician Orders for Life-Sustaining Treatment (POLST) form, which details specific medical treatments a patient would want during a medical emergency, and is designed to be a portable document. POLST forms are appropriate for individuals with a serious illness or advanced frailty near the end-of-life.

First, we provided a link to the Florida POLST directly on our electronic health record (Figures 1 and 2). This allows any of our clinicians to print out the Florida form from any site, and fill it out with their patient and his or her family, giving them the security of a document they can have at home that describes their wishes.

Figure 1. Electronic health record home page with Link to Allow Natural Death order and the Florida Physician Orders for Life-Sustaining Treatment form.

Figure 2. Florida Physician Orders for Life-Sustaining Treatment form.

Next, we have built a “Goals of Care Note” that is directly based on the Florida POLST form for documenting significant conversations. It is quicker to fill out than the original form, provides guidance for medical decisions beyond resuscitation for all of the care team to see, and satisfies Medicare’s billing requirements for Advanced Care Planning (CPT code 99497). The Goals of Care note is then saved in the listing of clinical notes so any anyone on the care team can review the documentation of our discussion and the patient’s wishes.

Conclusions

Saying goodbye or making significant healthcare decisions is never easy. For the sake of our patients, families, and care team members, we all need to do better. Primary physicians—who may be internists, specialists, surgeons, obstetricians, and pediatricians—should have discussions with patients about their wishes early in the course of a major illness. Document these discussions for the benefit of everyone on the care team. Make it a point to hear from patients directly, when they are still capable of communicating their own wishes.

Have the discussion with your family.

References

1. Gawande A. Being Mortal. New York: Henry Holt and Company; 2014.

2. Bernacki R, Paladino J, Neville B, et al. Effect of the serious illness care program in outpatient oncology: a cluster randomized clinical trial. JAMA Intern Med. 2019;179:751-759.

3. Paladino J, Bernacki R, Benville BA, et al. Evaluating an intervention to improve communication between oncology clinicians and patients with life-limiting cancer a cluster randomized clinical trial of the Serious Illness Care Program. JAMA Oncol. 2019;5(6):801-809.

4. Finlay GD, MJ, Smith RA. Measuring the modified early warning score and the Rothman Index: advantages of utilizing the electronic medical record in an early warning system. J Hosp. Med. 2014;9:116-119.

5. Schwartz rounds. www.theschwartzcenter.org/programs/schwartz-rounds .

6. The Conversation Project. www.theconversationproject.org .