A conversation about end of life care

Understanding a patient's wishes and values and using that information as a road map for care planning is at the heart of patient-centered end of life care.

Gaining this insight is the goal of advance care planning. To better appreciate the value of establishing EOL care goals with patients, I'd like to explore with you the common tenets of a good death, the role of physicians and hospitals in providing patient-centered end of life care, and the benefits of delivering patient-centered care for all stakeholders.

Defining a good death
What defines a good death? It is a very personal question and there are as many different answers as there are people. Research has shown, however, that there are common tenets of a good death that cross boundaries and build connections among patients, families and healthcare professionals.

Findings from an international literature review published in the American Journal of Geriatric Psychiatry last year identified 11 core themes of a good death. All surveyed stakeholders said they valued high-quality end-of-life care. Other themes deemed important included preferences for a specific dying process including the location of death and making the adequate preparation for it, pain and symptom management, and emotional well-being or support.

Despite these common themes among patients, families and providers, investigators identified subtle differences. For example, religiosity/spirituality was deemed more important by patients (65%) than by family (50%) and healthcare professionals (59%), while patients placed less emphasis on treatment preferences than did the other two groups (55% vs 70% for family and 61% for HCPs). Families also rated life completion, dignity and presence of family higher than patients, and providers placed less emphasis on psychosocial and existential aspects of care.

Although the findings don't indicate dramatic differences, the variations of opinion on a matter as important as end of life care make it necessary to consider the preferences of all involved and the need for having conversations with patients and their families.

Hospice care has longed played a key role in helping patients achieve a good death because it fosters such dialogue and incorporates patient and family wishes as part of the patient's individualized care plan. But primary care and hospital-based providers have a valuable role to play as well.

Identifying care goals
The first step to providing patient-centered care is understanding a patient's wishes and values concerning end of life care. Having this conversation seems straight forward, but many physicians struggle with this step. There are several tools available to help physicians engage patients on care goals. For example, the Physician Orders for Life-Sustaining Treatment Paradigm (POLST) form and Medical Orders for Scope of Treatment (MOST) form provide a framework for the discussion and serve as documentation that can be included in the patient's medical record.

Primary care providers should not underestimate their role in this process. A new study reported in the Annals of Family Medicine in January found that the greater involvement of primary care physicians in end-of-life care of chronically ill adults was associated with less intensive care and lower costs. By de-medicalizing death, greater focus can be placed on what the patient deems is a good death.

Hospital and hospice-based interdisciplinary teams are critical to providing patient-centered care, ensuring that all aspects of patient wishes and values are being addressed and reflect a patient's vision of a good death. However, patients and families may be initially reticent to integrate other key care team members, such as chaplains and social workers. Physicians need to demonstrate leadership by garnering the support of the whole team and leveraging everyone's expertise for the benefit of patients and families.

A care planning conference, bringing together key stakeholders, is the ideal environment to identify and communicate goals. Physicians can facilitate thoughtful conversation, allowing patients to voice their wishes and giving families the opportunity to address their concerns and express their support. A unified care plan often results from this process. In the limited cases where disagreements persist, however, patient wishes should prevail. Again, social workers and chaplains can be valuable contributors in these meetings.

Benefits of patient-centered end of the life care
Approved as a Medicare benefit in the 1980s, hospice care is a pioneer in patient-centered care that simultaneously drives value-based EOL care, where quality is pursued over quantity. Decades of clinical care and research demonstrate hospice services enhance the patient and family experience along with facilitating beneficial and effective care which coincidentally saves money for Medicare.

Just last month a study published in Health Affairs found that improved access to end-of-life care services for patients with terminal cancer helped improve patient outcomes while reducing healthcare utilization and cost. In particular, the Patient Care Connect Program, which included a program to determine patient end-of-life goals and family wishes to smooth the transition to hospice care, created per patient cost savings of $5,824, resulted in fewer ED visits, and saw higher hospice enrollment in the last 30 days of a patient's life.

By providing patient-centered end-of-life care, patient experience is improved while healthcare costs are decreased. There is a decrease in ICU usage and fewer nonbeneficial procedures are performed. Furthermore, when hospital readmissions go down, there is a corresponding decrease in Medicare penalties for hospitals.

Promoting patient-centered end of life care
The United States has been making steady progress in improving access to quality end of life care since the establishment of hospice care in the 1970s. To ensure that the care is patient-centered requires thoughtful conversations between healthcare providers and patients. Further progress can be made by having these conversations early and outside of a health emergency or terminal diagnosis with a primary care provider. This would go far to help normalize the process.

The decision by the Centers for Medicare and Medicaid Services to establish advance care planning codes for Medicare reimbursement is a step in the right direction. By encouraging this conversation during annual wellness exams or in separate office visits, primary care providers can ensure that patient wishes and values are understood and addressed.

According to CMS data, nearly 14,000 providers participated in advance care planning conversations with approximately 223,000 patients from January through June 2016, the first six months of the new reimbursement policy. This is encouraging news for patients and suggests that the subject is more top-of-mind for physicians.

Next steps
Dying is a natural stage of life, and advanced care planning is not an attempt to hasten it. It is about making sure that patient wishes and values are acknowledged and understood. This patient-centered approach to end of life care improves quality of life and subsequently may prolong it, as well. In fact, research published in the Journal of Pain and Symptom Management found that hospice care extends life of patients by approximately one month.

Unfortunately, many people in the United States are not receiving the end-of-life care they want. While 50-90 percent of individuals would prefer to die at home, only about 30 percent die in the location of their choice. Primary care providers and hospitals can help ensure that patients and families receive the EOL care that aligns with their wishes and values. They must be proactive in their efforts to engage patients in care planning conversations and communicate care goals throughout the patient's continuum of care.

Joseph Shega, MD, is Senior Vice President and National Medical Director for VITAS Healthcare, the nation's leading provider of end-of-life care. For the past 15 years, Dr. Shega has devoted his career to improving the care of older adults at the end of life. In conjunction with his work at VITAS, Dr. Shega serves as the chair of the ethics committee for the American Geriatrics Society, co-managing editor of the Pain and Aging section for Pain Medicine, and he serves on the Roundtable on Quality Care for People with Serious Illness through the National Academy of Medicine.

The views, opinions and positions expressed within these guest posts are those of the author alone and do not represent those of Becker's Hospital Review/Becker's Healthcare. The accuracy, completeness and validity of any statements made within this article are not guaranteed. We accept no liability for any errors, omissions or representations. The copyright of this content belongs to the author and any liability with regards to infringement of intellectual property rights remains with them.

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