Advance Care Planning
Advance Care Planning is a way to help patients think about, talk about and document wishes for health care in the event that they become incapable of consenting to or refusing treatment or other care. Being exposed to these conversations also prepares people for a time when they are still capable but may be faced with important health care decisions.
None of us know what tomorrow might bring, or can predict our future health. Planning today can ensure that your wishes are known, no matter what the future holds. Advance Care Planning guides all decision-makers and may bring comfort and peace of mind to families and to those who may have to make healthcare decisions on your behalf.
GCDs are physician (or designate) orders that:
A GCD is seen as a short-hand communication tool that guides all members of the health care team and assures the patient’s voice in decision-making.
A Goal of Care Designation Order is a medical order that specifies general care intentions, location of care and transfer opportunities for current and future care, and is signed by the most responsible health practitioner – usually a treating physician or nurse practitioner. A GCD order is determined by aligning the patient’s values, beliefs and care wishes with expert clinical advice regarding appropriate medical care.
All adults can benefit from Advance Care Planning as we may have an unexpected event or change in our health. All patients and persons in health care should be given the opportunity to participate in an ACP discussion. Planning ahead enables others to know your wishes, including family members and those providing care. These discussions could be initiated by the primary care physician as part of the patient’s routine health care, but they can also be initiated by patients or other healthcare professionals. They can occur in all health care settings. Advance Care Planning conversations allow for respectful understanding of wishes concerning care, as well as specific interventions. These conversations include communication among health care professionals, patients, and when appropriate, alternate decision-makers.
These conversations explore the goals for treatment and the patient’s wishes framed within the therapeutic options that are appropriate for the patient’s current clinical condition, and those which may be relevant for the patient’s future clinical conditions. They incorporate the values and wishes of the patient as well as guide interventions. These conversations should ultimately lead to the most responsible healthcare professional writing an appropriate GCD order.
Conversations are best started early in the patient’s course of care and/or treatment and/or when clinically appropriate to the patient’s care. Conversations and decisions about GCD are carried out with the patient or with the patient’s alternate decision-maker if the patient lacks capacity to make such decisions.
If it is clinically appropriate to do so, there are times that are particularly important to engage in GCD conversations. Here are some examples:
Every clinical situation is unique; however, the following questions offer a non-threatening way to ask about ACP/GCD.
Explore discussions with family, agent or health care providers.
These questions lead to natural exploration of wishes, or may help you be aware if the patient has appointed an alternate decision maker (ADM) or agent.
A patient can ask to have this conversation. Any member of the patient’s health care team (for example; MD, RN, RRT, LPN, OT, SW,) can initiate the conversation and conduct appropriate parts of the Advance Care Planning discussion. A physician or nurse practitioner is ultimately responsible to ensure the most clinically appropriate Goals of Care Designation Order is in place.
The conversations may include:
The MRHP is the physician or nurse practitioner who is overseeing the course of care for a patient. The formal policy definition is as follow:
Most Responsible Health Practitioner (MRHP) means the health practitioner who has responsibility and accountability for the specific treatment/procedure(s) provided to a patient and who is authorized by Alberta Health Services to perform the duties required to fulfill the delivery of such a treatment/procedure(s) within the scope of his/her practice. Currently in Alberta, to provide medical orders, the MRHP is usually a physician. In some circumstances, a Nurse Practitioner is the MRHP.
The MRHP definition is deliberately broad, to allow the flexibility to adapt to a change of clinical leadership or responsibility in any situation
Patients may see multiple physicians and Nurse Practitioners in the health care system, especially if they have health concerns needing specialist care. If that specialist is the one with the most accurate understanding of the diagnosis, treatments and potential outcomes or prognosis of the patient, then they are the most appropriate person to summarize the conversations amongst the patient by and the care team, and write the order.
Determining and writing a GCD Order is a cooperative activity involving the patient and whichever care providers are best placed to undertake these conversations. Often, the family physician is that care provider. As new information is understood from specialist consultants participating in the patient’s care, alterations to the Order may be required, and can be written by the consultant or the family physician
Here are some examples of times where the specialist might be best equipped to have the conversation and write the order. Note that oftentimes the family physician should be involved, may have written the GCD order, with the consultant confirming appropriateness in the context of what they know about the patient and treatment options:
If a patient’s most responsible health practitioner changes, the previous Goals of Care Designation order remains applicable unless changed by the new most responsible health practitioner. It should be reviewed with the patient by the new MRHP.
Goals of Care Designations should be reviewed when new circumstances or health issues arise, when a patient is transferred to a new location of care or if the patient or alternate decision-maker requests it.
A Goals of Care Designations order is prescriptive – it guides the clinical team regarding the course of care and interventions - but is also subject to clinical judgement of the current most responsible health practitioner. If the current GCD no longer makes clinical sense or seems to be in conflict with the patient’s wishes, it should be reviewed and can be changed if necessary.
Informed consent and patient signature are not required to make a Goals of Care Designation order because it is a medical order. As a medical order, it is the clinical responsibility of the most responsible health practitioner. It is standard clinical practice to engage the patient or alternate decision maker in all related discussions and decisions so their wishes are known and considered. A patient or ADM signature is not required for documentation.
Original GCD order forms are recommended as one source of truth, however if a health care provider must make a copy of the original Goals of Care Designation Order for any purpose, the health care provider should add a notation to the copy stating “true copy of the current Goals of Care Designation order for this patient” with the staff member’s signature, date and printed name.
Instances of when retaining a GCD Order photocopy on the patient’s chart is needed:
The ACP/GCD documents and Green Sleeve are the property of the patient. The unit clerk is to place a copy of the ACP/GCD documents on the health record and return the originals in the Green Sleeve to the patient.
If the original remains on the chart after the patient has been discharged, the unit clerk is to call the patient or facility. If unable to contact the patient and return the Green Sleeve, then the unit clerk sends it to Health Records. Health Records is to then return it to the patient by mail.
There is a paper version of a GCD Order. The form on which the GCD Order is written should be stored in the patient’s Green Sleeve except in areas that use electronic order entry.
In areas using an electronic health record the GCD order is entered and viewed in electronic format. When a patient is transferred from an electronic health record entry site to a paper order entry site, the sending unit prints a paper copy of the GCD order and places it in the Green Sleeve, giving it to the patient. This process also occurs if the patient is transferred to their home.
Both paper handwritten and electronically generated print forms are considered originals.
When there are multiple completed order forms (e.g. as a result of transfers or changes to health status) the following may assist in organizing the patient’s Green Sleeve:
While both a clear GCD order and Personal Directive are ideally completed prior to admission to a designated living option, they are not required prior to admission. If they have not been completed prior, this activity should be undertaken as soon as is reasonable after admission. If they have been completed prior to admission, the GCD Order should be reviewed upon admission to assure it still reflects an appropriate goal of care designation.
Decision-making by patients and the health care professionals who provide care to them is an integral component of health care. When circumstances bring significant complexities, including disagreement in what care is to be provided, additional decision support may be required.
The following are some examples of circumstances where dispute resolution may need to be initiated:
The Most Responsible Health Practitioner (MHRP) has a responsibility to ensure a patient is informed of, and has access to, the decision support and dispute resolution resources found in the Advance Care Planning and Goals of Care Designation Procedure paragraph 7 and in Appendix C.
Patient refusal of specific clinically indicated intervention(s) shall be honoured, within the bounds of applicable laws. Further conversations regarding patient refusal may be required.
Clinical judgment should determine the degree to which further conversations regarding patient refusal should be considered and whether or not a dispute resolution process should be invoked.
ACP GCD Procedure 2.1 states that GCD orders are reviewed when clinically appropriate. Some services and programs develop internal review processes as “best practice”. For example in many continuing care facilities residents have an annual care plan review, and at this time their GCD is updated.
The Advance Care Planning Goals of Care Designation Tracking Record is an AHS form that communicates to health care providers and others the ongoing decisions made about a person’s Advance Care Plan and Goals of Care Designation (GCD). The form reflects what was talked about; who was involved, what was decided and the reasons for the decisions, from the oldest to most recent conversation.
The original Tracking Record is kept in the Green Sleeve to allow care providers at each site access to and the ability to document the full record of conversations that have occurred over time. Having multiple versions/copies of the Tracking Record contributes to confusion and possible miscommunication. If multiple, sequential Goals of Care conversations have occurred, and a Tracking Record is full after noting each of these conversations, begin a new Tracking Record for the next conversation and keep the full prior Tracking Record in the Green Sleeve, stapled behind the current Tracking Record. When discharged or transferred, a copy is kept on the patient’s chart
Any health care professional or member of the healthcare team who documents in the chart can record information on this form. Patients and families don’t write on this form.
The Green Sleeve belongs to the patient. It is a plastic pocket that holds important Advance Care Planning documents and other forms that outline a patient’s goals for health care. It is given to patients who have had discussions or completed documents that refer to decision-making about their current or future care.
The information contained in the Green Sleeve is intended to ensure that all health care providers in any setting have access to important decisions related to the patient’s goals of care and guidelines for direction of interventions that have been discussed with the patient.
It is important that these documents reflect the patients’ most current information and serve as one source of truth. For more information, refer to: MyHealth.Alberta.ca- Green Sleeve Video
All Albertans can receive a Green Sleeve from any Alberta health care provider. The public is encouraged to ask their health care provider or family doctor for one and plan for a time to discuss their health care wishes.
AHS providers can order Advance Care Planning and Goals of Care Designation supplies online through DATAOnline.
Non AHS users can also order Advance Care Planning and Goals of Care Designation supplies online at no charge through DATAOnline. They will be required to set up a user profile and input a credit card number, however as long as they order ACP GCD supplies only, they will NOT be charged.
When the patient is receiving care or is admitted, the Green Sleeve should be placed at the front of the patient’s chart. On discharge the Green Sleeve needs to be returned to the patient.
In the patient’s home the Green Sleeve is to be kept on or near the fridge (Emergency Medical Services (EMS) personnel know to look for the Green Sleeve here). The Green Sleeve is intended to accompany the person as they transfer between care providers and/or sites.
A Personal Directive is a legal document that a person creates while capable of making their own decisions. It allows the person to name a decision maker (called an “agent”) and provide written instructions in the event the person no longer has the capacity to make their own decisions.
A Personal Directive names an agent for decision-making about personal matters. It can provide direction about personal matters including medical treatments, where to live and legal decisions.
You can write a personal directive in your home. Alberta government - voluntary form referenced in Step 2 You don’t have to submit any documents to the court or the Office of the Public Guardian and Trustee. As soon as you and your witness sign it, it’s a legal document.
A Personal Directive does not cover financial matters; to leave instructions for managing personal finances, an enduring power of attorney is required.
When a person is deemed unable to make personal decisions and a decision is required, a Personal Directive may be brought into effect after a capacity assessment has been completed.
When this happens, the person named as the agent has the legal authority to make decisions on an individual’s behalf based on the information in the Personal Directive.
On its own, the presence of a Personal Directive does not take away decision making power of a patient or give any authority to the named agent. Specific processes need to be followed to ‘enact’ or bring a Personal Directive into effect.
If you listed someone to decide if you have lost your capacity to make decisions, this person does an assessment. Most people choose a family member or a friend. It doesn’t necessarily have to be your agent.
A physician or psychologist also does an assessment.
If they conclude that you aren’t able to make personal decisions, they sign this form: http://www.humanservices.alberta.ca/documents/opg-personal-directives-form-opg5522.pdf
If you didn’t list someone to decide and you have lost your capacity to make decisions, then 2 service providers (e.g. a doctor, a nurse, the manager of a care facility, a social worker, etc.) each do an assessment. At least one must be a physician or psychologist.
If they conclude that you aren’t able to make personal decisions, they sign this form: http://www.humanservices.alberta.ca/documents/opg-personal-directives-form-opg5523.pdf
When this happens, the Personal Directive becomes enacted and the person named as the agent has the legal authority to make decisions on an individual’s behalf based on the information in the Personal Directive.
An enacted Personal Directive stays in effect until such time that a patient regains capacity (separate capacity assessment process required), or dies.
For more information on the following visit the Office of the Public Guardian at http://www.humanservices.alberta.ca/guardianship-trusteeship/personal-directives-how-it-works.html
A copy of the personal directive should be kept in the Green Sleeve as well as provided to the agent(s). The original should be kept in a safe place that is accessible if needed. It also can be registered with the Government of Alberta to provide contact information for the patient and their agents.
A copy of the personal directive should be given to the agent, family members, and your health care team.
Unless the Personal Directive is enacted, the agent has no legal standing to provide direction on the GCD order (in other words, if the person is still considered to have capacity, they are the legal decision-maker for their care). However, an individual may defer decision-making to another person by choice or include them in the discussions leading to a supported or joint decision. With capacity, that would be the individual’s choice.