Advance Care Planning Documents

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Goals of Care Designation (GCD)

To describe the general goal of your care, and the preferred location of that care, your health team uses a Goals of Care Designation. It should reflect the treatments that will be of benefit to you, and your own wishes and values. If you have a personal directive, the goal of your care in that document should be described in a similar way on your GCD form.

The GCD is documented on an Alberta Health Services form by your physician or nurse practitioner. It should be kept along with a copy of your other advance care planning documentation in a plastic Green Sleeve. Keep your Green Sleeve on or near your fridge. Emergency Medical Services will look for it there, when they enter your home. Any time you go to the hospital or to a healthcare appointment, take your Green Sleeve with you.

The terms used on the GCD form can be confusing, because they are written for health professionals. It is however important that you understand what the form means.  There are 3 general approaches to care:

Resuscitative Care (R)

The focus is to lengthen life using any medical or surgical means. This includes, if needed, resuscitation (CPR) to re-start your heart, intubation (a breathing tube that is attached to a machine that breaths for you) and admission to the intensive care unit. People with a chronic illness tend to do worse than people without a chronic illness if they need this level of care. There are many circumstances where it may not be recommended, but this depends on your level of function and how severe your disease is.

Medical Care (M)

Medical tests and treatments are used to cure or control an illness as much as possible. If your heart stops or you needed a machine to keep you breathing, the practitioners would allow you a comfortable death. This is used when resuscitative and life support measures won’t work or when the person chooses not to have these treatments. If resuscitation were not offered, your practitioners would explain this to you. Medical care can be given in many locations, depending on the person’s wishes, values, and how severe the illnes is. Medical care is very aggressive care, and many illnesses such as heart attacks, infections, bleeding, and clots can be well treated within this designation. Complications from cirrhosis such as fluid in the belly (ascites), confusion (encephalopathy), many types of bleeding, and infections can also be treated under this designation.

Comfort Care (C)

The focus of care is to provide comfort to ease a person’s symptoms, without trying to control the underlying illness. Treatments with a main goal of lengthening life are not undertaken. Treatment of conditions that may cause severe symptoms such as infections, mild heart attacks, blood clots, and other, can be considered. These treatments may lengthen life, but the main goal is to provide comfort. There will be a point in everyone’s life, when they no longer want any treatments. Usually when this happens, people are unable to get out of bed, no longer wish to eat, and can tell that their body can no longer tolerate the degree of illness they have. This care can be given in settings such as home, hospital, or hospice, described later in this booklet.

 

Enduring Power of Attorney

This is a legal document that allows you to designate someone to make legal or financial decisions for you. To get more information on Power of Attorney in Alberta, click here.

 

Personal Directive

This document allows you to name a decision maker or agent for your medical treatments in the event you do not have the capacity, or cannot speak for yourself. It can include instructions to be followed such as where you will live or the medical treatment you will receive. Many legal Personal Directives do not say the same thing that the Medical Goals of Care do. To get more information on Personal Directives in Alberta, click here.

 

Wills

This legal document allows you to direct your property after your death. It is usually includes someone named by you to represent and carry out your wishes after your death. To get more information on wills in Alberta, click here.

 

Q&A

How does Cirrhosis affect your response to life sustaining treatments?

Cirrhosis may affect your body’s ability to recover from illness. Many body functions are controlled through the liver. The degree that your liver is affecting the rest of your body, depends on what complications you have experienced. In addition, it depends on how functional you are in your daily life, for example- if you are up and out of the home all day, if you can care for yourself, or if you are in bed most of the time. All of these things are important to think about when deciding about a Goals of Care designation.

Early in cirrhosis care, these won’t seem like important issues. It is however important to know how the health care system operates in Alberta, as it will help you plan for and understand your future health care options. Having a Goals of Care designation is an important part of this.

A Goals of Care designation (stored in a Green Sleeve) can be documented with any of your practitioners. They should understand your values and your support systems, prior to making these decisions. The decisions may also take some time. Many patients wish to take the information home, and discuss it with their family and other people who support them. The Green Sleeve is available to all practitioners, and you can ask to discuss it at any time.

What if you change your mind?

It is important to understand that GOC designations can be changed at any time. People may wish to reconsider their wishes in many situations, but typically we suggest reviewing the designation in these specific circumstances:

  • Any time you need to go to the emergency department or are admitted to the hospital.
  • When you experience a new complication of cirrhosis.
  • If you are noticing your level of function is getting worse.
  • If you experience spiritual, emotional, or social issues that make you reflect on your wishes for your future health.
How do I get a green sleeve or other advance care planning documents?

A Green Sleeve is a plastic pocket that holds your important advance care planning forms.

There are 2 ways to get a Green Sleeve:

  • Ask your healthcare provider (such as your family doctor) for a Green Sleeve.
  • Order a Green Sleeve online. You can have up to 2 Green Sleeves mailed to your home by following these instructions. It can take 5 to 10 business days for your Green Sleeves to arrive. If you need to order extra Green Sleeves (up to a maximum of 2 per household), or if you have questions about your order, email [email protected].

References:

The information on this page was adapted (with permission) from the references below, by the Cirrhosis Care Alberta project team (physicians, nurse practitioners, registered nurses, registered dietitians, physiotherapists, pharmacists, and patient advisors).

This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.

References: 

  1. US Department of Veterans Affairs, Veterans Health Administration 
  2. Canadian Liver Foundation
  3. My Health Alberta 
Last reviewed March 15, 2021
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