Personal Directive (also known as an advance directive or “living will”): A legal document, in Alberta, which allows you to name someone who will speak for you, and be part of making your health care decisions, if you can no longer speak for yourself. It also allows you to provide written instructions to guide your care. You may change your personal directive at any time.
Life-saving/life-sustaining Medical Treatment: A range of treatments which use complex, invasive methods to save or prolong a person's life, such as CPR, ventilation, or dialysis.
Airway intubation: Putting a tube through within a person’s the airway to get oxygen into the lungs.
Cardiac arrest: When the heart stops beating. The chances of restarting the heart are small unless the person is otherwise relatively healthy, and attempts to restart the heart are made immediately.
Cardiopulmonary Resuscitation (CPR): Efforts to re-start the breathing or heartbeat of a person in cardiac or respiratory arrest.
Comfort care: Focuses on providing comfort for people with life-limiting illness when medical treatment cannot cure or control the disease. Comfort care aims to maximize a person’s quality of life, by treating symptoms and through medical, nursing, emotional and spiritual support.
Diagnosis: What your medical condition is called
Dialysis: Removal of waste, salts, and extra liquid from blood by artificial means when the kidneys fail.
End of life: When death as the natural result of illness or advanced age is expected within a limited period of time
Function: How a person moves and can manage day-to-day activities like eating, dressing and bathing.
Hospice: Care given to terminally-ill persons and their families by a team of nurses, social workers, and other support staff, working together with a doctor, usually in a dedicated care facility. The hospice team helps with the physical, emotional, and spiritual distress that is often part of the dying process.
Intravenous: Fluids and medicines given directly into a vein.
Mechanical ventilation: Use of an artificial breathing machine (usually a respirator) to deliver oxygen into a person’s lungs.
Palliative care: Is care that aims to improve quality of life, providing an extra layer of support and having a team focus to patient care for people and their families living with a serious or life-limiting illness.
Prognosis: What you might expect to experience in the future as a result of your medical condition.
Respiratory arrest: When breathing stops. The chances of restarting the breathing are small unless the person is otherwise relatively healthy, and attempts to restart the breathing are made immediately.
Symptom Management: Treating physical problems such as pain, nausea and shortness of breath. In comfort care, this can be done without treating the underlying cause of the sickness. For example symptoms can be managed in a person with cancer without treating the cancer itself.
Terminal condition: An incurable or irreversible disease or condition for which life-sustaining procedures may postpone, but cannot prevent, death.
Tube-feeding: Liquid (Hydration or water) or nutrition (fluid nutrients or food) administered through a tube that is put into a person's body. Tube-feeding can be used for either a short or long period of time.
What are your values, wishes, and goals for your health care? Think about what is important to you.
Do you have personal beliefs that influence your health care wishes?
Are there conditions under which you do or do not want a certain treatment?
Where would you want to be cared for?
Have you had past experiences with family or friends where health care decisions had to be made?
“It is helpful to think about your goals regarding prolonging life and quality of life, what independence, or being cared for in a familiar place such as home or care centre means to you.”
If you have an existing medical condition, it’s important to talk to your doctor or other health care providers. You can ask about your prognosis, that is, what you might expect to experience in the future as a result of your medical condition. You can learn about the possible medical treatments for your condition and what to expect from these treatments. You can understand the types of health care decisions you may need to make.
“While we can never predict exactly what life will bring, I can talk to you generally about what other patients with your condition have experienced.”
Unexpected or sudden medical events can leave us unable to communicate our wishes. Other medical conditions can slowly take away our ability to communicate or make decisions about our health care. This is why another important step in the Advance Care Planning process is to choose and legally appoint someone who can speak for you in the event you are unable to make medical decisions about our health care. This person would be your agent.
An agent can be anyone you choose, such as a family member or close friend. It is very important to discuss your values and wishes with the person you are considering to be your agent.
Some of the things you may want to consider:
Do I trust this person to make health care decisions with my health care team based on my values and wishes?
Are they able to communicate clearly?
Would they be able to make difficult decisions in stressful situations?
Is this person willing and available to speak for me if I were unable to make health care decisions for myself?
Likely the most important part of advance care planning is the conversations that you have over time with your designated agent, loved ones and health care team. Talking about your health with loved ones may be difficult, but understanding your wishes in advance will help them later on. It will help make an already stressful and uncertain time less difficult.
These conversations can also be helpful in determining the medical approach to your care or Goals of Care Designation, that best reflects your wishes and health circumstances.
Your wishes and values may change over time or with changes in your health, so be sure to keep the conversation open and communicate these changes.
“I spoke with my son about my advance care plan. At first he wasn’t keen. He tried to tell me I was needlessly worrying, and that I am fit and healthy. I know he gets upset thinking of a time when I won’t be here.
I explained that I intend to stay well, but in case something happens and I can’t speak for myself, I want him to be comfortable making medical decisions with my doctors. I was able to tell him what I value about my health and what my priorities are if I get very sick or when I’m dying. But, more importantly I know he won’t feel burdened or worried about making the right decisions for me, because now he knows the kinds of things that I value in my health.
Later, I called the rest of my family. I wanted to make sure they knew my son was my agent and what we’d talked about. I don’t want any misunderstanding when I’m sick.”
The next step in advance care planning is to document your wishes. This is called a Personal Directive. In a Personal Directive you choose an alternate decision maker to be your ‘agent’ – that is the person who can collaborate with your health care team if you are unable to do so. Your agents makes health care decisions on your behalf, in keeping with your wishes. You can also write down any other information about your wishes and values related to health care in your Personal Directive.
The Personal Directive only comes into effect if there is ever a time that you are unable to make decisions about your health care. It can be helpful in reducing conflict or distress and bringing comfort to those who are close to you, because it clearly states who your health care decision maker is and can provide guidance about your wishes.
Your Personal Directive can, and should be reviewed any time you have a change in your health circumstances or your wishes and values. If you would like more information about Personal Directives, you can contact the Office of the Public Guardian for assistance.
Office of the Public Guardian
In this approach to care, a patient is expected to benefit from and is accepting of any appropriate medical tests and/or interventions that can be offered, excluding ICU and resuscitative care. Additionally, locations for care (home, hospital, and care facility) are considered depending on what is medically appropriate and in keeping with the patient’s wishes and values. Medical care is an appropriate approach when resuscitative care therapies are unlikely to work.
In this approach to care, a patient is expected to benefit from and is accepting of any appropriate medical tests and/or interventions that can be offered and may include intensive care (ICU) and resuscitation.
In this approach to care, the aim of medical tests and interventions are for optimal symptom control and maintenance of function when cure or control of an underlying condition is no longer possible or desired. Transfer to a hospital may occur in order to better understand or control symptoms.
Within these three main approaches to care there are subcategories called Goals of Care Designations, which are used to further define and communicate your individual Goals of Care to health care providers. Talk to your health care team about which Goals of Care Designation best reflect your health circumstances and your wishes and values.