Advance Care Planning
What is it and why do you need it
Advance care planning (ACP) is defined as a process that supports individuals in understanding, and sharing their values, goals and preferences for future medical care. These care decisions are then formally documented within an Advance Directive, a forward-thinking legal document that empowers individuals, their loved ones and their care teams to make the right healthcare decisions moving forward.
ACP is a robust process that benefits individuals, family individuals, healthcare providers and health plans. In the healthcare space, ACP is often lauded as a “quadruple aim” solution, helping to holistically improve the experience, value and quality of care for all parties.
Benefits of Advance Care Planning
ACP improves the healthcare experience in two main ways:
- Empowering individuals with the education they need to make informed care decisions
- Ensuring individuals receive care that truly aligns with their goals and preferences
By providing education about disease progression and the risks and benefits of different treatment options, individuals can create a care plan that truly enables them to achieve their quality of life goals. In a study published in the Journal of the American Geriatrics Society, this education was found to significantly reduce levels of decisional conflict for adults, allowing them to more confidently make care decisions.
Likewise, by documenting and distributing these care decisions, ACP ensures that individuals’ care preferences are understood and followed throughout their healthcare journey, creating a higher quality care experience overall.
In addition to improving the experience of care, ACP (particularly early on in one’s care journey) has been proven to improve healthcare outcomes. One study published in BMJ Supportive and Palliative Care discovered that seriously ill individuals who participated in ACP had a 16% higher one-year survival rate after the intervention than patients who did not.
Another study from the New England Journal of Medicine found that seriously ill individuals who received early palliative care — of which ACP is a critical service — lived 30% longer on average, despite being 64% less likely to receive aggressive treatment.
These results demonstrate that, while often juxtaposed, quality of life and length of life can be improved simultaneously with ACP.
Although the benefits of ACP are often framed around the patient, ACP also alleviates caregiver burden by:
- Reducing the stress of decision making
- Removing family friction
Rather than struggling to settle on the “right” care choice during a healthcare crisis, ACP eliminates the stress of decision making for caregivers and allows them to focus on simply implementing their loved one’s care decisions. One study published in the Annals of the American Thoracic Society found that caregivers who engaged in ACP conversations had significantly less decisional conflict about care decisions than those who did not.
Additionally, ACP removes potential family friction that could arise due to uncertainty about who is supposed to make their loved one’s care decisions or disagreement on the best course of action for their loved one. Throughout the ACP process, loved ones can review the individual’s wishes and “what if” scenarios, giving them forethought into how an emergency situation might go and allowing them to voice their concerns in advance.
Finally, there is a good chance that caregivers — particularly spouses — are part of the same health plan as their loved one. Removing these caregivers’ burdens through ACP can alleviate stress and improve their overall health, reducing long-term costs for health plans.
ACP has been proven to significantly reduce healthcare utilization by eliminating unnecessary treatment that provides little to no medical benefit and/or does not align with individuals’ care goals. According to the IOM, this unnecessary care is the leading cause of waste in the healthcare industry, totaling $270 billion annually.
By ensuring individuals only receive care that they want, ACP helps individuals, families and health plans reduce overall care costs and ensure treatment plans are tailored to actually meet individuals’ goals of care. In fact, one study from the Journal of Palliative Medicine found that overall adjusted care costs were $9,500 lower for individuals who had participated in an ACP program compared to those who had not.
ACP has been proven to improve physician satisfaction. In the current model, physicians feel pressured to deliver ACP, yet often find themselves unable to do so for a variety of reasons, as reported by the Institute of Medicine:
- Two-thirds of physicians cited lack of time as their main barrier for facilitating ACP
- Others indicated psychological stress around ACP conversations as a major barrier to delivering this service
Shifting delivery of ACP to an external partner can alleviate this stress on healthcare workers, which in turn improves their satisfaction and overall delivery of care.
Getting Started With Advance Care Planning
Despite its many benefits, widespread participation is still relatively low. In fact, a poll by Kaiser Health found that 9 out of 10 adults believe they should discuss advance care planning with their doctor. However, Medicare data reports that only around 2.4% of seniors end up having these discussions with their doctor.
In today’s healthcare model, most individuals don’t have access to high quality advance care planning services. If they do complete advance directives, it’s typically on their own, with little to no outside support to help define and document their goals of care.
In order to have the best experience possible, individuals should consider the following elements of high-quality ACP:
- Timing of ACP
- Clarifying goals and values
- Disease-specific education
- Personalized service
- Comprehensive documentation and distribution
We’ll expand on each of these criteria below.
Who is a good candidate for ACP?
Ultimately, everyone is a good candidate for ACP. Otherwise healthy individuals still benefit from discussing and documenting their care preferences in the case of an unexpected healthcare emergency.
For people with serious illnesses, ACP is especially valuable and urgent; these conversations can help them work through the various medical scenarios they’ll likely face in the coming weeks, months and years, giving them confidence and peace of mind about their care choices.
When should you engage with the ACP process?
Any major life event can serve as a catalyst to begin and/or revisit one’s advance care plans. These events include:
- Receiving a new medical diagnosis
- Getting married
- Having children
- Joining the military or starting a new career
- Experiencing a serious accident
- Losing a loved one
- Moving to a new healthcare system
Across each of these pivotal moments, an individual’s care preferences may change. As a result, it’s helpful to continuously revisit and refine one’s advance care plans over time.
The Importance of Goals and Values in ACP
An individual’s goals and values serve as the foundation of their advance care plan; the “right” care choice for one individual can be completely different from the “right” care choice for another individual with identical circumstances based on a variety of personal factors.
When crafting an advance care plan, exploratory, open-ended questions about goals and values can help uncover these crucial differences. Some key questions to consider include:
- What is most important to you in life?
- What would be hard for you to live without?
- What does satisfactory quality of life look like to you?
These questions will eventually lead to more specific considerations about topics like independence, long-term symptom management, life-sustaining treatment options and more.
Types of Advance Care Planning Decisions
There are a few common ACP decisions regarding life support that should be included in every care plan:
- Ventilator Use
- Artificial Nutrition and Hydration
Additionally, there are a number of “non-typical” ACP decisions involving serious illnesses that come into play earlier in a patient’s care journey:
- What should happen when the patient can no longer care for themselves?
- What should happen when the current medical treatment plan is no longer effective or beneficial?
- What should warrant a trip to the emergency department?
Life Support Decisions
CPR is administered when someone’s heart and/or breathing has stopped. This procedure can be performed by caregivers, EMTs and hospital staff in the event of a healthcare emergency.
When deciding if they want CPR, individuals should reindividual that this intervention is often not without consequences. CPR can lead to physical injuries that bring a host of long-term complications, some of which can severely impact quality of life. Individuals — particularly those that are already impacted by a serious illness — may choose not to receive CPR for these reasons.
Ventilators assist individuals with breathing when they are unable to do so on their own. Unlike CPR, ventilators are often used before a patient stops breathing completely. One of the most important considerations of ventilator use during ACP is that this treatment fails to address the underlying causes of one’s symptoms. As a result, it is difficult to successfully come off a ventilator once treatment has begun.
With this in mind, some patients choose to implement time-limited trials for ventilator use, in which they elect to stop treatment after a certain period of time in order to avoid being on a ventilator indefinitely.
Artificial Nutrition & Hydration
Artificial nutrition and hydration ensure patients receive the nutrients and hydration they need through feeding tubes and IV fluids if they are unable to do so independently. Much like ventilator use, these treatments are difficult to successfully come off of because they fail to address the underlying causes of one’s illness.
As a result, some patients will choose to implement time-limited trials for artificial nutrition and hydration, while others may choose to forgo these interventions entirely.
Serious Illness Decisions
The “typical” ACP decisions described above tend to come into play during an acute healthcare crisis. While these decisions are certainly important, individuals should keep in mind that there are numerous care decisions that will need to be made earlier on in their healthcare journey when crafting their care plans. These decisions include:
- Living independently: If you can no longer care for yourself, would you prefer in-home care by family individuals or medical staff, or would you prefer to move into an assisted living facility?
- Illness management: If your current treatment plan is no longer effective or beneficial, would be interested in exploring surgeries or experimental treatment options?
- Time in hospital: If you are experiencing a medical event at home, at what point (if at all) would you like to be brought to the emergency room for further treatment?
These “upstream” decisions help you craft a care plan that accounts for your entire healthcare journey, giving you, your family and your care team more direction about how to best achieve your goals of care.
Advance Care Planning Documentation
Once you’ve settled on your ideal care plan, it’s time to formalize your decisions within legally-recognized ACP documents. There are a number of documents you’ll need to fill out during this process:
- Living Will/Advance Directive
- DNR Orders
- POSLT & MOLST Forms
- Power of Attorney for Healthcare
Making sure these documents are filled out correctly in accordance with federal and state regulations is key, as any errors could render them ineffective.
Beyond the documents listed above, individuals may want to consider adding documentation that describes their disease-specific goals of care, as many of these forms are designed to apply to anyone with any illness, despite the fact that each person will face very different healthcare decisions throughout their medical journey.
Furthermore, these forms are written in legalese that can be difficult for patients, family individuals and physicians to understand; crafting a summary of your care goals in plain English can help everyone gain a clearer sense of what you actually want during a medical crisis.
Types of ACP Documentation
A living will is also known as the directive to physicians or an advance directive. This comprehensive document details what you do and don’t for your care, advising your physicians to follow the decisions outlined therein.
Unfortunately, this document is written in legal terms, making it difficult for the average person to understand on their own. When filling out a living will, it’s helpful to consult someone that is familiar with both the legal and medical aspects of the document, such as a trained ACP facilitator or lawyer. This person should help you understand the options at your disposal, and should assist you in translating your care goals into a legally binding document.
DNR means “do not resuscitate”. A DNR order ensures that, while you are admitted to the hospital, medical staff will not begin CPR or intubation if you begin to code. Each time you are admitted to the hospital, you’ll have to go through the process of deciding if you would like to have a DNR order, as each DNR order only applies to the specific hospital visit in which it was created. Without a DNR order, medical staff will resuscitate you using normal interventions if you begin to code.
Medical Orders For Life-Sustaining Treatment (MOLST) and Physician Orders for Life-Sustaining Treatment (POLST) are medical order documents that vary on a state-by-state basis. State-level differences aside, these documents generally seek to describe:
- Resuscitation instructions
- Instructions for intubation and mechanical ventilation
- Treatment guidelines
- Artificially administered fluids and nutrition
- And more
- These are legally-binding documents that every healthcare worker involved in your treatment must follow.
The power of attorney for healthcare is also known as a medical power of attorney or healthcare proxy. This document formally recognizes the individual(s) that will be responsible for making care decisions on your behalf if you are unable to do so for yourself.
How to Choose a Healthcare Proxy & Alternate Proxy
When choosing a healthcare proxy and alternate proxy, some individuals are quick to pick their spouse or eldest child without carefully considering how they will be able to handle the responsibilities of this role.
Ideally, a healthcare proxy is someone that is available to help in an emergency. This means your proxy should be close enough to join you at the hospital if needed, or, at the very least, they can answer the phone if they are called on to make a medical decision.
Likewise, you’ll want to ensure that your healthcare proxy is able to make medical decisions based on what you want, rather than what they want. By deeply involving this person in the ACP process, you can help them gain a better understanding of your goals and preferences if they are ever in a position to make a medical decision on your behalf.
Family Involvement in ACP
Although ACP is very much centered around the patient, family individuals should be an integral part of these discussions, as well. Involving family individuals early and often in ACP:
- Gives patients someone to bounce ideas off of
- Removes family individuals’ uncertainty about treatment options and responsibilities
- Creates family alignment around the patient’s goals
- Provides clarity if family individuals need to act on the patient’s behalf
Just like any other plan, it helps to have everyone involved in an individual’s care be on the same page about ACP in order to eliminate any potential roadblocks or conflicts.
Making Your Healthcare Directives Accessible
Even if your advance directives are filled out correctly, they’ll still be ineffective if they’re not accessible when it matters most. Unfortunately, when most people fill out advance directives, these documents are then left in a safe or file cabinet — where they can be of no use during a healthcare emergency.
To ensure your healthcare directives are accessible, make sure you, your loved ones and your physician all have copies. In your home, this could mean taping a copy to the fridge so emergency medical personnel will be able to find them. In the hospital, you’ll want to make sure your documents are uploaded to your electronic health record so physicians can access them whenever they make a care decision.
By disseminating these documents widely and thoroughly, individuals increase the likelihood that their care wishes are actually followed, ensuring all of their hard work crafting an advance care plan is not wasted.
Continue the Conversation
Advance care planning is a uniquely personal process in which loved ones, caregivers and other important figures in your life can help you more confidently make the right care choices.
By embracing the ACP process and taking the time to deeply explore your care options, consult with loved ones, and reflect on what you truly value, you can feel empowered throughout your care journey. Our top tips for a successful ACP experience include:
- Get the support you need: As with any important decision, it helps to have support and input from those you love throughout the ACP process. As you work through your options, don’t be afraid to reach out to trusted support figures in your life for their help.
- Make sure you feel educated and empowered: Many ACP decisions fall at the intersection of medical and legal considerations. If you ever feel uncertain about any of these complex decisions, don’t hesitate to ask for further clarification or support.
- Stay proactive: ACP decisions are not set in stone. As your healthcare journey evolves, stay proactive about revisiting, refining and communicating your care goals with everyone involved.
Partnering with Iris
At Iris, we’re crafting the future of ACP programs. Working through health plans, our team of trained experts works to identify qualified candidates for ACP and assist these individuals and their families in deeply exploring and defining their care goals on an ongoing basis.
Using advanced software, we document individuals’ care goals in full compliance with state and federal regulations, leveraging our own proprietary documentation to ensure individuals’ unique care goals are described in full. Finally, we distribute these documents to the point of use, ensuring physicians and family individuals are empowered with the information they need to carry out individuals’ wishes.
If you’re a health plan looking for a high-quality ACP program to help you reduce costs and improve the individual experience, we’re here to help. To learn more about partnering with Iris, get in touch with us today.