It takes a system to respect patients' end-of-life wishes.
West Virginia has such a system and has been recognized nationally for it (Figure). (4) It includes 1) strong, clear health care laws, the West Virginia Health Care Decisions Act and the West Virginia Do Not Resuscitate Act; 2) trained advance care planning facilitators; 3) a POST program; 4) an electronic online registry for treating health care providers to access a patient's advance directive, do not resuscitate (DNR) card, and/or POST form in a medical emergency; and 5) Emergency Medical Services that checks the Registry in the transport of medically unstable patients (Table).
West Virginia is one of only two states in the country considered to have a "mature" POST program (www.polst.org). To qualify to be considered mature, more than 50% of all healthcare setting (hospitals, nursing homes, and hospices) in all regions of the state have to be demonstrated to be using the POST form. West Virginia has also garnered national attention because of its online West Virginia e-Directive Registry. This registry receives advance directives, DNR cards, POST forms, surrogate selection forms, and guardianship papers from treating healthcare providers and the public and with the consent of patients or their legal agents releases them to treating healthcare providers at the time of a medical crisis. In a March 13th, 2015 New York Times article, West Virginia was noted as a pioneer in end-of-life planning because of its POST program and online registry. (4)
POST programs have become a national best practice for identifying and respecting patients' end-of-life wishes by translating them into medical orders. In its 2014 report, Dying in America: Improving Quality and Honoring Individual Preferences near the End-of-Life, the Institute of Medicine encouraged all states to adopt a POST or similar type program. (1) The National Quality Forum and AARP have also recognized the POST program and "internet based registries" as preferred practices to improve the care of the dying by honoring individuals' preferences near the end-of-life. (5)
West Virginia's e-Directive Registry has grown steadily since its creation in October 2010. It has received over 50,000 forms with more than 1,000 new forms received per month. It provides 24 hours a day, 7 days a week online access to treating healthcare providers through the West Virginia Health Information Network login function (http://www.wvhin.org/default.aspx). It is a password-protected HIPAA-compliant system. It provides accurate, relevant information about a patient's preferences for treatment in a medical crisis. Because of the volume of forms received by the West Virginia e-Directive Registry, in May 2015 the e-Directive Registry contracted for a new fax service which allows an unlimited number of faxes to be received at the same time. The new fax number for the registry is 844.616.1415.
Advance directives are another success story for West Virginia because more West Virginians have completed advance directives than residents of any other state. Based on market research surveys conducted by the West Virginia Center for End-of-Life Care (www.wvendoflife.org), 50% of West Virginians have one or more types of advance directives. The next closest state to have documented advance directive completion by its citizens is New York with 42%. Advance directives were first developed in California in the 1970s because of fears by patients of lingering deaths, intense, painful suffering, tremendous burdens on family, and no control by patients or family over the end-of-life care treatment that a patient receives. Now all 50 states and the District of Columbia have advance directive laws and forms. Research has shown, however, that advance directives are not as effective as initially thought. Research by multiple researchers including those at the WV Center for End-of-Life Care have demonstrated that advance directives do not impact a patient's site of death. (5) Though 92% of West Virginians state a preference to die outside of the hospital, only 57% of deceased West Virginians who have submitted advance directives to the West Virginia e-Directive Registry do, and there is no significant difference between this 57% and the 59% of all West Virginians who die outside of the hospital.
In contrast to advance directives, the POST form has been shown to have much more of an impact on where patients die. Eighty-eight percent of West Virginians who submitted a POST form with comfort measure orders to the Registry died outside of the hospital. (5) This is as would be expected since the POST comfort measure orders read, "Do not transfer to hospital for life-sustaining treatment. Transfer only if comfort needs cannot be met in current location."
Advance directives are still helpful in patient care. The medical power of attorney document provides treating healthcare providers the name of the person the patient trusts to make decisions for him or her if the patient loses decision-making capacity. Also, a West Virginia Living Will, which only goes into effect if the patient is terminally ill or in a persistent vegetative state and also lacks decision-making capacity, states the patient's preferences not to receive life-prolonging interventions that would serve solely to prolong the dying process or maintain the person in a permanently unconscious state. Advance directives have generally been found to be most helpful once a patient has been hospitalized and a physician has determined that the patient lacks decision-making capacity. The West Virginia Center for End-of-Life Care recommends that all West Virginians over the age of 18 complete one or both types of advance directives so that the person they want to be making medical decisions for them and the type of treatment they do and do not want at the end of life can be known and respected. The cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, all young women in their 20s at the time they lost decision-making capacity, underscore the importance of completing advance directives since it cannot be predicted in advance when a situation may arise in a person's life when advance directives will be helpful.
POST forms, which are medical orders, are identified by emergency medical services as they are transporting patients to emergency departments, and a POST form with comfort measures orders may lead to the patient being admitted to a hospice or spared unwanted intubation in the emergency department and mechanical ventilation in an intensive care unit.
Since 75% of West Virginians repeatedly say in surveys conducted over the past decade that at the end-of-life they would prefer to live a shorter period of time to avoid pain, suffering, and being kept alive on machines, the POST form more than advance directives allows West Virginians with such preferences to be treated according to their wishes and with the emphasis on comfort as opposed to treatments which might increase their suffering. (5)
For the end-of-life care in West Virginia to be exemplary and nationally respected, it is based on a system of care (Figure). There are seven deliverables that distinguish the West Virginia system to respect patients' wishes (Table).
One not previously mentioned component of West Virginia's system to improve end-of-life care is its hospital-based palliative care teams. In 2014, West Virginia hospitals provided a total of 3,676 palliative care consultations. Palliative care consultants identified patient's goals for treatment, provided pain and symptom management, provided psychological and spiritual support to patients and families, and assisted patients and families and healthcare professionals to identify a discharge plan based on the patient's overall condition and preferences. Not surprisingly, the most common diagnosis of patients receiving palliative care consultations in West Virginia hospitals is cancer. Other common diagnoses are lung disease, strokes, dementia, and heart disease. The most common discharge location for patients seen by hospital-based palliative care teams is hospice either at home or in a hospice house. Only about a fifth of those seen in consultation die in the hospital.
In summary, West Virginia's Center for End-of-Life Care is contributing to national best practices, and its citizens are benefiting. Through research in collaboration with those in other states, Center personnel have demonstrated that the POST form is superior to advance directives in impacting patients' site of death. The number of forms submitted to the West Virginia e-Directive Registry is increasing and the number of people logging on to the West Virginia e-Directive Registry to search for patients with advance directives and medical orders is up over 300% from 2014. West Virginia's Palliative Care Network is continuing to grow with more patients having their pain and symptoms controlled and more being discharged home where they prefer to be at the end of life. Although these outcomes speak quite highly to West Virginia's system for end-of-life care, there are still many opportunities to improve the system including a greater percentage of West Virginians completing advance directives, more hospitals developing palliative care services, and more nursing homes assisting their residents to complete POST forms.
The accomplishments in West Virginia are only possible because of the continuous support by the Governor and the West Virginia Legislature and the oversight of the West Virginia Department of Health and Human Resources through the Bureau for Public Health. For a small state with limited resources, the Center for End-of-Life Care has enabled West Virginia to stand out nationally as a model program to assist other states in providing better end-of-life care to their citizens. For questions about West Virginia's innovative program to respect patients' end-of-life treatment wishes or to receive forms or resources, please visit the Center for End-of-Life Care website, www.wvendoflife.org, or call 877.209.8086.
1. Describe the process of advance care planning;
2. Explain West Virginia's nationally recognized system to respect patients' wishes and the components of that system; and
3. Explain the advantages of the POST form compared to advance directives to respect West Virginians' preferences to die outside the hospital.
Alvin H. Moss, MD, FACP, FAAHPM
Professor of Medicine, Sections of Nephrology & Supportive Care
Director, WVU Center for Health Ethics & Law
(1.) Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences near the End-of-Life. Washington, D.C.: National Academies Press, 2014.
(2.) Citko J, Moss AH, Carley M, Tolle SW. The National POLST Paradigm Initiative, 2nd ed. Fast Facts and Concepts. September 2010; 178. Available at: https://www.capc.org/fast-facts/178-national-polst-paradigminitiative/. Accessed October 21,2015.
(3.) Gillick MR. Reversing the code status of advance directives? N Engl J Med 2010; 362:1239-1240.
(4.) Span P. "The trouble with advance directives." New York Times, March 13, 2015. Available at http://www.nytimes.com/2015/03/17/health/the-trouble-with-advance-directives.html?_r=0. Accessed October 21,2015
(5.) Pedraza SL, Culp S, Falkenstine E, Moss AH. POST Forms More Than Advance Directives Associated with Out-of-Hospital Death: Insights from a State Registry. J Pain Symptom Manage 2015. In press.
Table. Deliverables of West Virginia's System to Provide High-Quality Care for Patients with Advanced Illness * Standardized practices, policies, and forms * Trained advance care planning facilitators * Timely discussions prompted by prognosis * Surprise question, "Would I be surprised if this patient died in the next year?" * Clear, specific language on an actionable brightly colored, easily identified POST form * Orders honored throughout the system including Emergency Medical Services * Quality improvement activities for continual refinement * Online secure electronic registry for 24/7 access to patients' directives and orders
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|Title Annotation:||Special CME Issue|
|Author:||Moss, Alvin H.|
|Publication:||West Virginia Medical Journal|
|Date:||May 1, 2016|
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