Doctors, nurses, social workers, chaplains and other healthcare professionals face heartbreaking situations on a daily basis. Clinicians face sudden traumatic life-changing injuries, the unexpected death of young patients, and families having great difficulty making end-of-life decisions, especially when antecedent discussions with their loved one did not occur. Simultaneously, healthcare practitioners face daily stressors in an ever-changing, fast-paced, complex health care system. This combination can leave health care professionals overwhelmed and at risk of burnout. As a result, clinicians may have difficulty being empathic and the care of patients may suffer.

Empathy means being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another. The impact of empathy on seriously ill persons is increasingly recognized. My former patient, Nila Webster, describes the impact in “Gratitude in the Setting of Stage IV Lung Cancer: How Innovative Caregivers Help the Success of Treatment,” published in the “On Being a Patient” column of the January 1, 2013 issue of the Annals of Internal Medicine, pages 71-72. Her personal reflections are highlighted in the second article of this newsletter.

Empathic clinicians have honest, compassionate conversations and provide person-centered care. Seriously ill patients who might die in the next year deserve to be treated with dignity, respect and compassion and to receive care that is focused on the individual’s goals. Families need and deserve to receive support.

Honest compassionate conversations take time. Unfortunately, the confluence of society’s failure to recognize death as the final chapter of life is coupled with the increasing demands on the time of physicians. Physicians identify “not enough time” and “inadequate payment for the time” as frequent barriers to thoughtful end-of-life discussions. Despite these challenges, patients and families deserve to have these conversations. Incorporating them into practice is vital.

Studies have shown that end-of-life discussions are associated with less aggressive treatment choices near death and earlier hospice referrals. People live longer when palliative care is incorporated into the treatment plan. Palliative care provides an extra layer of support for the patient and family, ensures that attention is paid to the person’s goals for care and focuses on pain and symptom management. Aggressive treatment without palliative care is associated with worse patient quality of life and worse bereavement adjustment.

Culture change is needed to move the mindset from “more treatment is better” to “the right treatment and care, and no more.” Clinician training coupled with public education, engagement and empowerment is needed if we are to ensure shared medical decision-making that is well informed. We must help all professional caregivers find the calm, clarity, meaning and connectedness that underlie true person-centered, family-oriented care. Caring for people near the end of life is the ultimate professionalism.

Before initiating the discussion, a clinician needs to prepare as outlined in the 8-Step MOLST Protocol. Step 5 reminds clinicians to respond with empathy. Medical orders are not signed until Step 7. Once MOLST orders are signed, the care plan should include a palliative order set, including directions on what to do in an emergency, 24 hours a day, 7 days a week.

Thoughtful MOLST discussions begin with discussion of the person’s values, beliefs and goals for care based on current health status and prognosis. The MOLST process does not end with the discussion. After completion, care planning and caregiver education are essential.

Ideally, the health care agent, family and caregivers witness the discussion. If not, they must be aware of the individual’s decisions.

Accessibility of the MOLST is needed in an emergency. While it is preferable to have the pink MOLST form travel with the patient, any colored MOLST forms and photocopies, faxes, or electronic representations of the original, signed MOLST are legal and valid.

Alfredo Torres, MD, FACP serves as Director of Inpatient Medicine & Associate Director of Emergency Medicine at River Hospital in Alexandria Bay. Dr. Torres has been a staunch advocate of MOLST since the MOLST program began in Rochester, New York in 2004.

“As an emergency medicine physician, I recognize the value of the MOLST to the patient and their family in guiding treatment in an emergency.”

Dr. Torres enrolled in eMOLST after he attended enhanced MOLST/eMOLST training with passage of the Family Health Care Decisions Act. As a result of the training, he recognized the value of eMOLST in ensuring accessibility in an emergency and accuracy by eliminating potential incompatible medical orders.

When an 82 year old gentleman with multiple medical problems arrived in the emergency room of River Hospital with acute respiratory failure, Dr. Torres quickly identified the gentleman as an appropriate candidate for MOLST. However, he had no MOLST upon arrival. Dr. Torres quickly accessed eMOLST. Because he had an eMOLST in the registry, this elderly gentleman avoided intubation and a 99-mile ambulance ride to University Hospital in Syracuse. Dr. Torres abided by the patient’s wishes expressed in eMOLST, followed the orders and treated him conservatively. He was discharged home a few days later.

Dr. Torres’ story highlights how eMOLST achieves the triple aim: the simultaneous pursuit of improving the experience of care, improving the health of populations, and reducing per capita costs of health care. The value of eMOLST in allowing patients to die on their terms is highlighted in the 2014 Annual Report of Caring.

By NILA J. WEBSTER

One of the lessons I realized as I met with doctors is that some members of the medical community view death as failure. For this reason, some doctors are reluctant to open the door to one of the most important conversations a patient and caregiver can have. And yet, one of the greatest gifts doctors can provide is this precise conversation, approached in a caring way. This conversation doesn’t mean death is imminent or that anyone has lost hope. Rather, such conversations are a sign of respect. For me, it has been liberating to share with doctors that quality of life supersedes all any desire for heroic measures, and that my greatest preference is to die without pain, rather than return again and again to the hospital for treatments or procedures that may be painful, disruptive, and in the end, not prolong my life in any way. And even if my life were prolonged, I do not want this longevity to be accompanied by side effects, pain, and hospitalization. This is why my doctors and I have already discussed having a palliative care nurse visit my home to ensure I will have what I need to meet my goal: the goal of a peaceful death.

Five years ago, a study was published on the value of palliative care. I remember this study well, because it came out three weeks after my diagnosis of stage IV terminal cancer. I read the study and was gripped by the findings: “As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at end of life but longer survival.” I realized this study had the power to change how we approach terminal illness. Compassion had just been medically validated. This compassion includes talking about end-of-life wishes in a way that is truly caring.

End-of-life discussions are a form of palliative care, and are as essential as pharmaceuticals and surgical knives. Knowing I have shared with my doctors, and my caretakers, the manner in which I wish to die, gives me a sense of serenity that registers on a physiological level. In the spirit of the palliative care study, these discussions are as medicinal as they are palliative. Most important, on a human level, such conversations are of a true connection, something that is healing for all involved.

Nila J. Webster, pictured above with her mother, is a published children’s author living in Boston, MA. She was diagnosed with stage 4 terminal lung cancer in July 2010. Nila continues to do well on a form of chemotherapy that usually fails after several months. She attributes the longevity of her treatment to the compassion extended to her by several doctors including a surgeon, all of whom support her belief that patients can be active participants in their own treatment.