How will this module help me?
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.
Four STEPS to plan for end-of-life decisions with your patients:
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.
Step 1 Prepare your practice to use a letter, or another planning tool.
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.
End-of-life letter template (45 KB)
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:
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.
Step 2 Invite your patients and their families to have a conversation, and to involve you as appropriate.
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.
Step 3 Discuss each patient's completed letter or other tool and add it to the electronic medical record.
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.
Step 4 Remind your patient to periodically update the letter,tool, or advance directive, as appropriate.
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: