Advance Care Planning: What is it and why do I need it?

 Guest Blogger - Graceful Passage LLC Barbara Marshall, End of Life Doula

I would like to provide a practical approach to Advance Care Planning. For starters, I know for most when they hear phrases like, “Advance Care Planning” or “Advance Directives”, they either roll their eyes or simply just ignore the conversation altogether. Adults of all ages should have at least the bare minimum of advance care planning documents in place. We never know what could happen. Want proof of that? Who would have ever thought the USA would be in the midst of a massive pandemic, which has resulted in mandatory mask mandates, the shutdown of the economy and schools for over a year, and over 500,000 deaths? The answer is, no one. It is not a matter of if something will happen, but rather when.

Simply put, Advance Care Planning (ACP) documents are a person’s wishes put in writing so that others can act on the individual’s behalf, should it become necessary. ACP documents are not only a gift for self, it is a gift for those who would be caring for you when something does happen. Think of the ACP documents as a roadmap - getting an individual and their loved ones from point A to point B. The ACP documents are not just for those with a terminal diagnosis. EVERY adult should have the basic documents in place. ACP documents provide peace of mind for the individual as well as their loved ones. One does not have to go through an attorney to have these documents completed. For Indiana residents, most of the basic documents can be found at https://www.in.gov/isdh/25880.htm (Indiana Advance Directives Resource Center website). That being said, it must be noted that some documents may need notarized or witnessed.

I am not an attorney, nor do I profess to be one. However, I spent nearly 9 years in the hospice industry and, time and time again, I witnessed the angst that occurs when one does not have documents in place. I saw loved ones in despair when attempting to make gut wrenching medical decisions when the patient has not made their wishes known. I have been involved with cases where a patient is in desperate need of hospice services and unable to sign their own admission documents. That patient goes without the additional care and services they deserve at the end of their life. I have been involved with families who have argued over the bed of their loved one in an attempt to decide what mom or dad wanted. Therefore, I am providing a real world practical overview of the basic documents that one needs to have in place. The basic ACP documents may include:

1) Healthcare Power of Attorney/Surrogate/Proxy/Representative; 2) Living Will;
3) POST/Physician Orders for Scope of Treatment; and
4) Durable Power of Attorney.

Let’s do a review of each of these basic ACP documents:

Healthcare Power of Attorney/Surrogate/Proxy/Rep: Naming someone to be an individual’s voice when the individual can no longer speak for self when decisions need to be made regarding the clinical, medical or health status of that individual. The healthcare proxy needs to be someone who will follow the individual’s wishes, not the wishes of the proxy. The proxy needs to be aware of the individual’s wishes and willing to accept responsibility therein. The representative appointment needs to be witnessed. The POA must be notarized. The proxy

needs to have a copy of the document. The proxy does not have to be a family member. In fact, in many cases, depending upon the family dynamics, it may be preferable NOT to name a family member.

Living Will: A statement outlining an individual’s wishes for life sustaining measures regarding medical treatment when the individual is no longer able to speak for self. The typical living will outlines the measures a person desires when the individual has an incurable or life limiting condition, that death will occur within a short period of time, and that the use of life prolonging procedures would be futile. It also outlines whether or not the person wishes to receive artificially supplied nutrition/hydration, or intentionally makes no decision regarding such. It must be noted that a Living Will is only a document making a person’s wishes known. A Living Will is not a medical order, and if presented in a medical setting, it may not be followed. This document requires two (2) non-immediate family members to witness.

Durable Power of Attorney: Naming someone to oversee, conduct and exercise control over the financial and contractual affairs when the person is no longer able. Most often the Durable POA must be notarized to be binding. Typically, the Durable POA does not allow for the decision making over an individual’s body or health unless there is a specific subsection doing such.

Physician Orders for Scope of Treatment (POST): The POST is a four-part medical order, which outlines an individual’s wishes for medical treatment with regard to a chronic or terminal illness. The POST was designed to reflect an individual’s Living Will wishes in the form of a provider-signed medical order. It was also designed to be a more specific advance directive than a Living Will. A Living Will is not a medical order and if presented in a medical setting may not be followed. A completed POST with the appropriate signatures, including the healthcare provider signature, is an order that must be followed by a provider in a medical setting. If a person decides not to complete a particular section, it is assumed that is authorization for full treatment for the provisions described. It is preferred that the patient sign the form for self even if the signature is illegible. A family member is not allowed to sign the POST unless that family member has been legally appointed as the Healthcare POA or representative. Documentation of that appointment must be provided if the representative is signing. The individual may revoke or update the POST at any time. If the POST is being completed by an appointed representative, it is incumbent upon the representative to honor the patient’s wishes for treatment, not the proxy’s wishes for that person. It is recommended that the POST be reviewed annually or when there is a change in medical status. A legible copy of the POST should be given to the healthcare proxy and all involved with the person’s care (family, caregivers, physicians, etc). It is the State of Indiana’s preference that a copy of the POST be posted on-or-in the refrigerator as emergency healthcare providers know to look there for ACP documents. Many people don’t want the document to be so easily visible so the recommendation is to place it inside a cabinet near the refrigerator. The State of Indiana also recommends that the POST be copied on astrobrite pink paper so that it is easily identified. It is only a recommendation. Copies are valid. EVERYONE involved with providing care needs to know where the document is located. A copy of the POST may be found at http://www.indianapost.org/wp-content/uploads/2016/12/Indiana-POST-Form.pdf

This review of the POST includes language directly from the form and/or the directions for the form.

● Section A: Cardiopulmonary Resuscitation (CPR) - Yes or no. It is important to understand that CPR is a violent act. Every nurse I know says that if she isn’t

breaking ribs, she isn’t doing her job. According to the Indiana University Center forAgingOptimisticProjectthefollowingapplies: “CPRworksbestiftheperson is healthy with no illness and it can be done within a few minutes of when the heart stops. CPR does not work well if you have chronic health problems, have an illness that can no longer be treated or if you are older and weak.” The Optimistic Project also reports that “if the patient is in the hospital and CPR is performed, you have a 22% chance of it working and leaving the hospital alive. CPR works less than 3% of the time if the person is older, weak and living in a skilled facility.” If this section is completed, it is not necessary to have a separate Do Not Resuscitation document.

• ●  Section B: Medical Interventions -

  • ○  Comfort Measures: Treatment goal is to allow for a natural death with

    implementing measures to keep the individual comfortable. The last two sentences are key: “Patient prefers no transfer to hospital for life-sustaining treatments. Transfer to hospital only if comfort needs cannot be met in the current location.” Keep in mind this refers to the chronic or terminal condition. If someone falls and has a laceration that needs suturing, the patient may go to the hospital. If comfort measures are chosen, it is especially important that a copy of the POST accompany the person to the hospital.

  • ○  Limited Additional Interventions: Treatment Goal is stabilization of the medical condition including transfer to the hospital if indicated. The goal is to avoid the intensive care unit and not to intubate. Keep in mind that once a person has crossed the threshold of the hospital and life sustaining measures are being implemented the person may end up in the ICU and intubated.

  • ○  Full Interventions: Treatment Goal is full interventions including life support in the ICU, intubation and mechanical ventilation as indicated.

• ●  Section C: Antibiotics - Directions on the use of antibiotics. Typically, if the

  person is receiving hospice services the use of antibiotics for infection are used as comfort measures (i.e., a UTI is uncomfortable so it is a comfort measure to use antibiotics). If curative measures of the condition is the goal then one would want to choose to use antibiotics consistent with treatment goals.

• ●  Section D: Artificially Administered Nutrition - If the medical condition allows, “always offer food and fluid by mouth if feasible.” According to the POST form there are 3 choices:

  • ○  No artificial nutrition.

  • ○  Defined trial period of artificial nutrition by tube. (A time limit may be

    assigned. It must be noted that in my experience, if the patient is in a

    skilled facility it is very often difficult to discontinue the tube feedings.)

  • ○  Long-term artificial nutrition.

• ●  There is an Optional Additional Orders section where the patient may include any specific orders.

• ●  Section E: Signature of patient or the legally appointed proxy. If the POST is being completed and signed by a legally appointed proxy, documentation of that appointment should be provided. All boxes that state ‘required by statute’ should be completed (signature, printed name and date).

● Section F: Contact information for the legally appointed proxy who signed the document. The ‘relationship’ box is required by state statute. It is preferable that the signor’s address and phone number be provided.

● Section G: Check which box represents who completed and signed the POST. ● Section H: Signature and contact information of the treating physician. All

boxes that state ‘required by statute’ need to be completed. Any treating physician, advance practice nurse or physician assistant may sign the POST.

For those with chronic or terminal conditions, I am a HUGE proponent of the POST. I cannot state it enough: A Living Will is not a medical order. Thus, the patient’s wishes may not be made known or followed in a medical setting. The POST should follow the patient - to a provider’s office, emergency room, assisted living, skilled nursing home and in the individual’s home. All those caring for the individual should have copies. Keep multiple copies of the POST where easily accessible so that when something happens a copy can be gathered to go with the patient.

Five Wishes: This document is a program of Aging with Dignity. Many believe the Five Wishes is a softer approach to the end of life conversation. It is an 11 page document that outlines an individual’s wishes similar to a Living Will though more comprehensive. . Fives Wishes is a 5 part document covering the following: 1) The Person I Want to Make Care Decisions for Me When I Can’t, 2) The Kind of Medical Treatment I Want or Don’t Want, 3) How Comfortable I Want to Be, 4) How I Want People to Treat Me and 5) What I want My Loved Ones to Know. In the State of Indiana, Five Wishes is not a legal document unless accompanied by a completed Indiana Living Will. It must be noted that the Five Wishes document is copyrighted and copies should not be used. One can purchase the document online for $5.00 at www.fivewishes.org or request one from your provider or hospice agency. If your provider does not have a copy, please feel free to contact me as I would be happy to provide.

By now I would imagine that your eyes are glazed over. I know, I get it. Never in my life did I expect to spend my days discussing death and dying much less become an End of Life Doula and Elder Care Consultant. However, the powers that be had another plan for me. I have witnessed on more occasions than I can count what not having these documents in place can do to an individual or their loved ones. Give your loved ones the gift of peace of mind - completed Advance Care Planning documents!

For more information or assistance in completing ACP documents, contact Barb Marshall with Graceful Passage LLV @ 317.572.8070 or barb.gracefulpassage@gmail.com