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Describes four STEPS to help your patients convey their end-of-life decisions.
Provides answers to common questions about using templates for end-of-life discussions.
Shares a sample letter end-of-life care for your practice to use.
Approximately 2.7 million Americans die every year1 and only about one-third of all Americans have any type of advance directive for their end-of-life decisions on file with their health care providers.2
Advance care planning is a way to support patient self-determination, facilitate decision making, and promote better care at the end of life. Although often thought of primarily for terminally ill patients or those with chronic medical conditions, advance care planning is valuable for everyone, regardless of age or current health status. Planning in advance for decisions about care in the event of a life-threatening illness or injury gives individuals the opportunity to reflect on and express the values they want to have govern their care, to articulate the factors that are important to them for quality of life, and to make clear any preferences they have with respect to specific interventions. Importantly, these discussions also give individuals the opportunity to identify who they would want to make decisions for them should they not have decision-making capacity.3
Without this information, end-of-life decisions may be made by family members and the care team that do not reflect the patient's decisions. Patients may receive unwanted, expensive, high-intensity care that may not improve their quality of life. Families may face greater emotional strain as they struggle to make decisions, not knowing what their loved one would have wanted.
Patients are responsible for preparing their end-of-life care documentation and making their wishes known. While physicians are not required to have end-of-life care discussions with patients, if a physician wants to assist patients to make choices, there are many end-of-life decision tools, templates, and resources available. Patients, in consultation with their physician, should utilize the tool, template, or resource with which they feel most comfortable. In addition, a patient should consult with a qualified attorney.
One resource that your practice may want to consider promoting as an end-of-life letter template has been developed as part of the Stanford Letter Project. It facilitates the important conversation that your patients should have with their families and care team long before an emergency situation arises. The letter covers:
What matters most to the patient.
How the patient and family make decisions.
How the patient and family handle bad news.
Who the patient wants to have make medical decisions.
What the patient does and does not want.
The patient's thoughts about palliative sedation.
How to resolve conflict about a treatment decision.
The questions and prompts in the guide help patients to think about their end-of-life care plan. The answers that the patient provides can later be transferred into legal documents such as advance directives or living wills. While these letters are not the same as advance directives, they are complementary and can give guidance to the patient and family members as they enter the advance directive process. Patients should execute legally-binding documents such as advance directives to protect their end-of-life decisions.
This table explains the differences between an end-of-life letter and an advance directive.
Prepare your practice to use a letter, or another planning tool.
Invite your patients and their families to have a conversation, and to involve you as appropriate.
Discuss each patient's completed letter (or other tool) and add it to the electronic medical record.
Remind your patient to periodically update the letter, tool, or advance directive, as appropriate.
Introduce the goals of the end-of-life discussion tool to your team and practice leadership. Communicate expectations about who will introduce the tool to patients, how to use the end-of-life discussion tool, the advance directive process, and who can answer questions about end-of-life care or the tool itself. Once these expectations are understood, build them into the practice workflows.
You may want to consider sharing this video to show the importance of advance care planning.
Quiz Ref IDYou can download the Stanford Letter Project end-of-life letter template in English, Spanish, Hindi, Mandarin, Tagalog, Russian, Urdu, and Vietnamese on the Stanford Medicine Letter Project website.
You can also find a letter-to-advance-directive form here; this form allows patients and families to take the contents of the end-of-life letter and use it to complete an advance directive for patients in California.
Effective end-of-life conversations should include clear and respectful communication between the physician-led team, the patient and the patient's family. If you would like additional guidance on advance care and end-of-life planning, you may want to consider the following websites and resources:
Respecting Choices® Advance Care Planning
The Palliative Care training portal at the Stanford School of Medicine
The National Institute on Aging's: Understanding Healthcare Decisions at the End of Life
The Institute of Medicine's Dying in America report
As stated previously, there are many end-of-life decision tools, templates, and resources available; physicians and patients should utilize the tool, template, or resource with which they feel is most effective in your setting. In addition, a patient should consult with a qualified attorney so their wishes are preserved and effective in accordance with state law requirements.
Is it always the physician who should work with the patient on the end-of-life discussion tool?
Quiz Ref IDWith the appropriate training, anyone in your practice can have meaningful conversations about how to document end-of-life decisions with patients. The Stanford letter is written in clear and simple language so that patients can fill it out by themselves. This relieves some of the burden on physicians, and gives the family the opportunity to be involved.
However, a majority of patients and their family members are interested in having discussions about their end-of-life decisions, and most expect their physician to initiate the dialogue.4 It is also important to note that the advance care planning codes are for clinical billable providers (e.g., MD, PA, advanced practice nurse).
How can I help my patients as they consider whether and how to prepare an advance directive?
You should encourage your patients to consult legal counsel and resources to create the advance directive from their end-of-life letter. Your patient is responsible for preparing his or her own valid advance directive. You may refer patients to the end-of-life letter template, which the patient and their legal counsel can modify based on the advance directive. As a physician, you may provide information and support upon patient request. There are a number of resources for both patients and physicians available on the AMA website on advance directives.
How can my workflows reflect the new step in my practice process?
Ideally, conversations about the end-of-life letter should take place over two visits. During the first visit, the nurse or medical assistant (MA) introduces the letter and explains to the patient that they can take the letter home to discuss it with their family and fill it out at their convenience. At the second visit, the MA can ask if the patient brought their completed letter and then enter the appropriate information into the chart. The MA can scan the letter into the chart before the physician enters the room. If requested, the MA can inform the physician that the patient would like to discuss the letter with him or her.
How should I talk about the end-of-life letter with my patients?
Using a script may provide a guide to beginning the conversation about the letter with your patients, as well as how to answer some of the questions that may come up about the letter and advance care planning. In your practice, if you plan to have patients take the letter template home with them to discuss with their family, start with the explanation of the letter and how to use it.
You may choose to have the conversation with a subset of your patients, such as older patients or those with a complex medical history or life-threatening condition. Selecting a subset of patients will enable you to automatically flag those who should be encouraged to consider completing a templated letter or advance directive. As your comfort with the conversations increases, you may wish to expand to additional patient groups.
Some of your adult patients who are currently healthy may not know whether they would want a feeding tube, ventilator support, or other interventions at the end of life. Let these patients know they have the option to leave those questions blank and update the letter when they're ready. Other patients may already have completed a version of the letter or advance directive. If patients want more information about the end-of-life letter, refer them to the Stanford Letter Project resources.
Where do I start with the rollout of an end-of-life tool? Should it be on a small scale or practice-wide?
Quiz Ref IDThere is value in starting with a pilot rollout. A physician or pod (a small group of clinicians within your practice) can start the process and learn how the conversation with patients and family members occurs most effectively. Pilot participants can report back to the larger group on their learnings as they refine their process or as the rollout expands.
Should family members or caregivers be a part of the conversation?
Patients should manage their own end-of-life discussion including answering the questions in the end-of-life letter and discussing their answers with their family and proxy decision makers. This helps ensure that everyone is aware of the patient's decisions, and maximizes the effectiveness of the letter and its use in completing the advance directive template. Family members and caregivers who know what the patient wants can advocate for the patient and ensure that their loved one's decisions are met. Including the family members or caregivers in the conversation may also help prevent situations where a family member, proxy, or caregiver might make a decision that is not in line with the patient's wishes. As a physician, you should provide end-of-life information upon the request of the patient.
Quiz Ref IDIf requested, discuss any questions the patient has about their end-of-life letter. While the end-of-life letter is useful to identify patient values, preferences for treatment, and designation of surrogate decision maker, the letter is not legally binding. Encourage the patient and their family to use the completed letter as a guide for a healthcare power of attorney or other legally binding document with end-of-life care instructions, with competent legal counsel if necessary. The patient may wish to carry a copy of the document and their physician's contact information with them at all times.
If the patient has an advance directive document or written designation of proxy or other legally-binding document, include a copy (or note the existence of the directive) in the medical record. You may be able to enter the completed letter directly into the record or scan in the letter using a barcode. Otherwise, the letter should be manually scanned and saved. If the patient has not yet completed a legally-binding document, a completed letter can provide useful guidance but it is not binding.
If the patient has an accident or episode and is taken to another facility, the care team there should have access to the documentation of the patient's decisions, such as an advance directive. If not available when the patient arrives, the receiving facility can reach out to your practice to obtain guidance, so the patient's decisions will still be honored.
Who should review the end-of-life letter with the patient?
A trained clinician, such as the physician, nurse, MA, or mid-level provider, should review the completed letter or other document with the patient to answer any questions. If the letter-to-advance directive template is used, the completed advance directive can be printed, signed by the patient, witnessed, and filed in the EHR during this visit. The patient should keep a copy of the advance directive.
Quiz Ref IDPatients may wish to update their end-of-life plans for a variety of reasons. Check in with patients on an annual basis to ask if they would like to update their preferences. The annual visit could be a consistent time for the practice team to check with patients about any updates they'd like to make to their end-of-life documents, such as an advance directive.3
Your practice team can encourage patients to take an active role in end-of-life planning. The simplicity and accessibility of end-of-life tools means that patients can complete the tools at their convenience, where they are comfortable and in the presence of their family and friends if they choose. Encourage patients to enter legally-binding end-of-life care documents. Your team can provide peace of mind to patients that their end-of-life decisions will be respected by their care team and loved ones.
Additional guidance on advance care planning and advance directives:
American Medical Association Code of Medical Ethics: Advance Care Planning
American Medical Association Code of Medical Ethics: Advance Directives
American Medical Association Encouraging the Use of Advance Directives and Health Care Powers of Attorney H-140.845
Writing an end-of-life letter can empower patients.
The letter can help patients and their families personalize their end-of-life decisions and ensure that their voice is heard by their care team. End-of-life letters should be used to guide the drafting of legally-binding documents.
End-of-life letters can empower practices.
Working with your patients on end-of-life letters may make your team feel more confident that they are providing not only the best care, but also emotional support to the patients who need it most.
Not a lot of effort is needed to make a big impact.
Writing an end-of-life letter and other documents should be done by patients outside of the physician office, freeing you and your staff to answer questions and have critical conversations about patient decisions during the visit.
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Marie Brown, MD, Senior Physician Advisor, Professional Satisfaction and Practice Sustainability, American Medical Association & Associate Professor, Rush Medical College, Rush University Medical Center
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