Advance Directives Give Teeth to End-of-Life Choices
By Cherif Abdelmalek, MD; Sunil Goyal, MBBS; Arshjyot Narula, MD; Robert Paulino, MD; and Linda Thomas-Hemak, MD
Technological advances and disease management capabilities provide physicians more guidance than ever on judicious end-of-life treatment. But it’s important to ensure that patients are equipped with end-of-life choices as well.
Today’s healthcare environment continues to direct greater focus on patient empowerment and a patient’s guided and shared decision making in providing comprehensive primary medical care. Complying with a patient’s wishes during the end-of-life process can never be underrated.
Studies have shown that during end-of-life care, critically ill and terminal patients often don’t receive the type of treatment they really desire. The biggest challenge lies in wisely using the available resources in accordance with a patient’s wishes without concurrently compromising the standard of care. Achieving this balance is consistent with the Institute for Healthcare Improvement’s Triple Aim Initiative designed to improve patient health and enhance a patient’s care experience while controlling costs.
As the over-65 age group continues to grow in the United States, so will the cost of healthcare delivery. The healthcare cost per capita for those over the age of 65 in the United States and other developed countries is three to five times greater than the cost for those under the age of 65. The rapid growth in the number of older people, coupled with continued advances in medical technology, is expected to create more pressure on health and long term care spending. Subsequently, decisions concerning end-of-life care affect a large and increasing number of individuals.
More than 80% of decedents in the United States each year are Medicare beneficiaries. Annually, about 5% of Medicare beneficiaries die, and more than one-quarter of Medicare expenditures are for care in the final year of life. In 2009, among the nearly 2.5 million deaths in the United States, roughly 20% (approximately 487,330 deaths) occurred in the ICU setting, according to the Centers for Disease Control and Prevention. ICU expenses can cost up to $10,000 per day.
In 2008, Medicare paid $55 billion just for doctor and hospital bills during the final two months of patients’ lives. It is estimated that 20% to 30% of these medical expenses may have had no meaningful impact for patients. However, there is a disconnect between what patients and their families desire from end-of-life care and what they experience, especially if end-of-life decisions have not been made prior to an illness. According to statistics from a 2011 Oregon Health & Science University study, 46% of do not resuscitate (DNR) orders were written within two days of death. And among patients for whom DNR orders are executed, fewer than 50% of their physicians were aware of the patients’ wishes. Additionally, although most Americans would prefer to die at home, most die in institutions. Therefore, it appears there is a huge disconnect between what patients and families want and what they experience in the ICU at the end of life.
According to a study published in The New England Journal of Medicine, estimated lifetime Medicare payments in 1990 ranged from $13,044 for people who died at the age of 65 to $56,094 for those who died at the age of 80 to $65,633 for those who died at the age of 101 or older. A report in the Archives of Internal Medicine suggested that if even one-half of the estimated 566,000 American adult cancer patients who died in 2008 had the end-of-life discussion, the projected savings would conservatively have been $77 million.
In 1990, Congress passed the Federal Patient Self-Determination Act to encourage Americans to prepare an advance directive. Despite the talk about end-of-life care planning, fewer than 20% of Americans have an advance directive in place, according to a US Department of Health and Human Services 2008 report to Congress. Of those who do, up to 75% of their physicians remain unaware of it because the directive is not included in the patient’s medical record or transitions of care. This means that only about one in 20 Americans can feel secure that his or her wishes will be respected if he or she loses the ability to directly control his or her own care, as acknowledged by Archelle Georgiou, MD, a former health plan executive and advance directive proponent.
Passage of the Affordable Care Act has given healthcare providers an opportunity to redirect available resources toward quality enhancements in healthcare for older adults. As a result, physicians should proactively employ the underutilized tool of advance directives. Doing so will not only provide assurance to patients that their healthcare wishes will be implemented but also save patients’ families from the painful position they face when there is no advance directive in place, often leading to family disagreements.
Advance Directive Components
The document is used only when a patient is medically unable to make and convey treatment decisions. End-of-life care wishes can be changed at any time. When a patient chooses to make a change, a new advance directive should be recorded and transmitted to appropriate personnel related to patient care. The advance directive should be re-evaluated yearly with any changes recorded.
Options may vary in different healthcare systems, but the common goal of an advanced directive is to identify and document a patient’s exact care wishes before a potential health crisis. Patients should be provided explanations and offered the following treatment options for inclusion in the document:
• Full code: This includes CPR, intubation, mechanical ventilation, ICU transfer, and generally all aggressive medical measures, such as antibiotics, blood transfusions, a nasogastric tube, and dialysis. Patients may decline specific treatment modalities or procedures, and such choices can be documented in a specific instruction section.
• Trial of treatment/best medical practice: This employs full code for a limited time period. Initially full resuscitative and treatment measures are employed; however, if a patient’s condition fails to improve after a given period of time and the prognosis or outcome is poor, less aggressive measures should be discussed with the healthcare proxy, including extubation (if intubated) and withdrawal of treatment to transition to comfort care and hospice services. Continual discussions with the healthcare proxy usually play a vital role in trial of treatment.
• DNR: Patients can be intubated and placed on a mechanical ventilator; however, no CPR, chest compressions, or cardioversion are to be performed if a patient goes into cardiac arrest.
• Do not intubate: If a patient goes into cardiac arrest, chest compressions can be performed, and resuscitative medications can be given; however, the patient doesn’t want intubation or mechanical ventilation.
• Palliative care/comfort measures only: In cases of terminal illness or poor prognosis for recovery, a patient may choose palliative care and symptomatic management of chronic conditions only. The primary focus is making the patient comfortable, including keeping him or her pain free, facilitating easy breathing, and providing individualized special needs, such as emotional and spiritual support.
• Hospice care: This program provides care and support for terminally ill patients with a prognosis of six months or fewer if the disease follows its usual course. The focus is on comfort measures rather than attempting to treat incurable and terminal illnesses. A trained team of professionals and caregivers, who are on call 24/7, provides whole-person care, including physical, emotional, social, and spiritual needs. Services may include physical care, counseling, drugs, equipment, and supplies, and a patient’s physicians and the hospice medical director may work together to coordinate care. Hospice care is generally provided at home but can also be provided at hospice facilities, hospitals, nursing homes, and other long term care facilities. Family members can also receive support.
In 2010, an estimated 1.58 million patients received services from hospice, according to 2012 statistics from the National Hospice and Palliative Care Organization. Medicare and Medicaid hospital benefits as well as most private insurers cover hospice care.
• Do not hospitalize: Patients with advanced chronic progressive medical conditions with poor long-term prognosis may choose not to be hospitalized for treatment of acute issues and opt for comfort care measures only. It is advisable that such patients receive home hospice services that can manage symptoms, with a primary focus on patient comfort.
With full understanding of all available options, patients can make care choices, employing different combinations of care alternatives. Patients can also document specific wishes regarding organ donation, blood transfusion, dialysis, or even more specific wishes for medical care, depending on personal requirements.
Take the Initiative
An effective stepwise approach to identify and implement end-of-life care wishes includes the following:
• Discuss advance directives with patients, explaining the essential elements and providing material for patients to review to make an informed and independent decision.
• Encourage patients to discuss end-of-life care wishes with family, close friends, and primary care providers.
• Document care choices in a living will.
• Encourage patients to appoint a healthcare proxy/agent.
• Make copies of documents for patients, the healthcare proxy, family members, and primary care physicians for electronic medical records (EMRs).
Providers need to assure patients that they will continue to receive adequate treatment for their current medical conditions even if they decide to avoid rigorous measures at the end of life. Embracing these strategies, if practiced appropriately, can create a stepping-stone for medical practices to help older adults receive the end-of-life care they desire while using available resources and medical technology more appropriately.
After the documentation of advance directives is completed to be consistent with a high-functioning medical home platform, it can be an effective vehicle for value-based and family-centered care. Meaningful use of EMRs can enable transmission of this information to all care venues to guide care delivery and shared decision making.
Transmission of the document facilitated by EMRs with operable and effective care coordination incorporating each change in healthcare provider and care transition is beneficial to patients and healthcare delivery systems in accordance with the advance directive initiative.
With continuing progress in research and technology and ongoing advances in the management of conditions such as cancer, stroke, and multiorgan system failure, medical science is better equipped to diagnose and define illnesses and conditions as untreatable or irreversible, leaving less leeway for inaction in healthcare. Such precision makes it more important than ever to know when to discontinue life-saving efforts, particularly in the case of prolonging life of questionable quality.
Sometimes physicians succeed in saving a patient from dying but at the cost of subjecting that patient to a poor quality of life. Healthcare, legal, and social policy and practice have yet to catch up with this reality.
— Cherif Abdelmalek, MD, is an internal medicine resident at the Wright Center for Graduate Medical Education in Scranton, Pennsylvania. Sunil Goyal, MBBS, is a clinical observer at the Wright Center. Arshjyot Narula, MD, is an internal medicine resident at the Wright Center. Robert Paulino, MD, is an internal medicine attending physician at the Wright Center. Linda Thomas-Hemak, MD, who is board certified in internal medicine/pediatrics, is program director for internal medicine at the Wright Center for Graduate Medical Education.