Some things in life, especially healthcare, require careful preparation. The adage "a failure to plan is a plan to fail" rings particularly true when unforeseen circumstances can leave you voiceless at critical moments. Choosing not to make a decision is a decision in itself, and leaving your healthcare outcomes to chance is a risk you shouldn't take. Advance Care Planning (ACP) is not just a process; it's a safeguard for your personal desires and healthcare wishes, ensuring they are known and respected when you might not be able to express them yourself. This post delves into the challenges, goals, benefits, and societal perceptions of ACP, empowering you to act, educate yourself, and ask your primary care provider for the help you need when triggers occur.
What challenges might you face when engaging in Advance Care Planning (ACP)?
Multiple obstacles hinder widespread advance care planning adoption. A major barrier is the traditional, paper-based nature of ACP, which introduces logistical hurdles and can lead to adverse outcomes. Paper document shortcomings are particularly evident during transitions of care, where the absence of accessible ACP documents can lead to redundant form creation, increased administrative burdens, and dissatisfaction among you and your family, especially when treatments diverge from your previously and meticulously articulated care preferences.
Moreover, approximately one in three American adults had yet to complete any form of advance directive for end-of-life care. This gap in preparedness is compounded by the fact that many physicians, who are pivotal in initiating ACP conversations, report a lack of training in this critical skill. A 2016 survey highlighted that 68% of physicians had no training in end-of-life discussions, underscoring a systemic gap in healthcare education and practice. This deficiency is particularly problematic given that while 60% of older Medicare beneficiaries have engaged in end-of-life conversations, only 27% occurred in a clinical setting, pointing to a disconnect between your needs and healthcare delivery.
What’s distressing is that in critical care settings, only about 4.8% of patients presenting with acute emergencies had an ACP readily available for the admitting medical team. This scarcity is even more pronounced among younger patients and those admitted from home, suggesting a critical need for interventions to ensure documents are available across the healthcare continuum for adults of all ages.
What are your goals when planning for care in advance?
ACP’s foundation lies in empowering you, safeguarding your healthcare wishes are both heard and honored. It establishes a framework where your spiritual values, quality of life considerations, and preferences for future, urgent, and end-of-life care are paramount. These considerations become the guiding principles for all clinical decisions. ACP-specific goals are to:
“A key recommendation is that advance care planning alone — and certainly advance directives — are not enough,” says Tulsky. “The focus needs to be on the quality of communication about goals of care, not just the fact that it happens.” ~James A. Tulsky, MD
Make Sure Your Values Guide Clinical Decisions. ACP puts what’s important to you at the forefront of healthcare delivery. Engaging in the advance care planning process helps insure decisions regarding treatments and care interventions match with your own beliefs and quality of life objectives. This alignment is critical in maintaining your dignity and autonomy, especially when you may no longer be able to communicate your wishes directly.
Facilitate Open Communication. Although potentially anxiety provoking, ACP opens channels for candid discussions between you, your family, and healthcare providers. It creates a space for conversations about sensitive topics such as end-of-life care priorities, preferred living locations, potential medical interventions, and desired outcomes. These discussions ensure that all parties have a clear understanding of your wishes, reducing ambiguity and potential conflicts.
Promote Informed Decision Making. Through ACP, you will be provided consequential education to make informed decisions about your healthcare. This involves understanding the nature of your conditions, related treatment options, and the implications of choosing one path over another. ACP guides you through key elements of the decision-making process, offering clarity and support as you consider what you might like.
Support Family and Caregivers. ACP also serves as a support mechanism for your family and caregivers, providing them with the assurance that any decisions they make on your behalf will honoring your wishes. Both knowing your preferences and understanding why you made a given choice alleviates the burden on your family to make difficult decisions in times of crisis and reduces the emotional stress associated with guessing what you would have wanted.
Accelerate Healthcare Delivery. By clearly documenting and sharing your care preferences, ACP helps streamline the delivery of healthcare services when time is of the essence. This clarity allows medical teams to act swiftly and appropriately in urgent situations, guided by a solid understanding of your goals of care and what you value most in a given set of circumstances. It also minimizes unnecessary interventions and procedures that may not align with your values and require greater out-of-pocket spending.
How Does Advance Care Planning Benefit You?
It is an essential process that offers significant benefits, profoundly impacting your healthcare experiences and providing peace of mind to you and your loved ones. Here are the tangible and far-reaching benefits of engaging in ACP:
Ensures Your End-of-Life Wishes Are Met. Research shows that when you discuss your end-of-life care wishes with loved ones and healthcare providers, those preferences are honored 90% of the time. This high rate of adherence underscores the effectiveness of ACP in ensuring that your desires for care and treatment are respected, giving you control over your healthcare journey.
Reduces Unwanted Medical Interventions. A remarkable 94% of individuals do not receive treatments they had previously declined and 89% had their end-of-life wishes met, thanks to ACP. This statistic highlights how ACP helps you avoid unnecessary and potentially distressing medical interventions, allowing you to only receive care that aligns with what’s valuable to you.
Alleviates Decision-Making Burdens. The Health and Retirement Study found that 70% of individuals aged 60 and older were unable to participate in treatment decisions in their final days. ACP relieves your family and caregivers from the heavy burden of making critical decisions under stress, ensuring that they are executing your expressed wishes.
Supports Preferences for Place of Death. Despite 80% of Americans expressing a preference to die at home, the reality often falls short, with the majority dying in hospitals or nursing homes. ACP can bridge this gap, with studies showing that documented preferences for the place of death and "do not resuscitate" orders significantly increase the likelihood of dying in the desired location, ensuring a more peaceful and dignified end-of-life experience.
Engaging in ACP is not merely about making choices; it's about ensuring that those choices lead to the most compassionate and appropriate care possible.
What People Really Think About Advance Care Planning?
Your perception of ACP may lead to mixed feelings, significantly influencing your willingness to engage in ACP. For example, these five considerations often impact personal engagement.
Recognition of Importance. A significant 70% of people who engaged in ACP did so because they recognize how critical it is in ensuring their healthcare wishes are honored. This strong acknowledgment highlights the importance of ACP in maintaining your healthcare autonomy.
Reactive Responses. About 15% of Americans might start thinking about ACP due to a hospitalization, surgery, or health crisis, and another 10% might do so after losing a loved one. These numbers suggest that while emergencies can spur you to act, adopting a proactive approach could lead to more thoughtful and deliberate decisions.
Healthcare Provider Influence. For 8% of you, a suggestion from a healthcare provider might initiate your engagement in ACP. However, 68% of physicians report they haven't received training on how to have end-of-life discussions, indicating why these conversations might not be initiated by your healthcare providers. Don’t wait. If not offered, ask.
Barriers to Engagement. Despite recognizing its importance, 54% of older adults have not completed any ACP documents. Reasons include procrastination (62%), a lack of knowledge on how to proceed (15%), discomfort with the topic (13%), and feeling it’s unnecessary (13%). This diverse range of reasons points to a need for more education and support to make ACP more accessible and easier to understand.
Cost Concerns. Expense has been mentioned as a barrier for 7% of older adults, with many holding the misperception that advance care planning needs to be done as part of estate planning with an accountant or lawyer. However, multiple high-quality free options are available, making ACP accessible to everyone.
The varied attitudes toward ACP underscore the importance of tackling misconceptions and obstacles directly to get the most out of the process.
What should trigger your advance care planning discussions?
Life's unpredictability highlights the need for timely ACP. But knowing the right time to start these conversations isn't always clear. Certain life events and health conditions can trigger future care discussions, urging you to think about your healthcare preferences and share them with loved ones and healthcare professionals.
For example, Acute hospitalization is often a major trigger for ACP discussions. With the one-year mortality rate for emergency admissions at 22.6%—and most of these deaths occurring within three months of first admission—an unexpected hospitalization becomes an obvious place to start the conversation. This is especially true if you're over 70 and experiencing an increasing number of ER visits, signaling big decisions may be on the near horizon.
Pre- and Post-hospitalization visits with your primary care provider offer a great opportunity to deepen your disease trajectory and treatment options understanding, as well as explore your goals of care.
Generally, advance care planning covers a broad spectrum that adapts to your health status over time, including future care planning, urgent care planning, and end-of-life planning. Understanding these distinctions can help you make informed decisions about your healthcare during different stages of your life.
Future Care Planning focuses on your long-term well-being. If you have a prognosis extending several years, this type of planning helps you consider your overall health, potential illness trajectories, and quality of life. It's centered around your personal values and aims to align your future healthcare with your overall life goals. This is a great place to start if you're currently healthy or managing stable chronic conditions.
Urgent Care Planning is tailored for you if your prognosis is more limited, generally one to two years. This planning stage is about preparing for more immediate healthcare needs and potential emergencies. It includes decisions about the extent of medical interventions you prefer, such as cardio-pulmonary resuscitation and treatment limitations. Tools like MyDirectives allow your urgent care plans to be accessed by out-of-hours healthcare teams, ensuring that your care aligns with your wishes during emergencies.
End-of-Life Care Planning is recommended if your prognosis is less than 12 months. This planning focuses on ensuring that your remaining time is as comfortable as possible, including where and how you prefer to spend your final days. It's about making sure that your care is compassionate and respects your values, reducing stress for both you and your loved ones during this difficult time.
Statistically, the urgency of ACP becomes apparent considering the mortality rates following hospital admissions. In one study, 59% of older adult died within three months after hospitalization. Another 18% died between three and six months, 12% between six to nine months, and about 10% died within nine months to a year of ER admission. Not surprisingly, one-year after hospitalization mortality rates increase with age—20% for those 70 to 79 years of age, 23% in men and women 80 to 89 years, and increasing to 28% in those aged 90 and above—each hospital visit can be a decisive trigger for discussing and updating your ACP. Therefore, if you are admitted to the hospital, especially in an emergency, it's a pivotal time to review or initiate these discussions.
What’s Next for You in Advance Care Planning Considerations?
Empowering you to make informed decisions at every stage of life is at the core of advance care planning. It bridges the gap between your healthcare preferences and clinical practice, ensuring that your wishes guide your care journey. Just as the adage "a failure to plan is a plan to fail" suggests, choosing not to prepare for future healthcare needs is a decision in itself. As you face the complexities of aging, embracing ACP is not merely a choice but a necessity, reflecting your commitment to achieve dignified care and your desired quality life. Stay tuned for our next blog post, which will further explore the elements of Advance Care Planning, giving you more knowledge to ensure healthcare meets your personal values and needs.