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CHAPTER 3: ADVANCED CARE PLANNING AND LIFE SUSTAINING TREATMENT WHEN VERY ILL
Contents
All adults should do ADVANCE CARE PLANNING.Advance Care Planning helps others know what we want from health care when we are too sick to speak for ourselves. If we or someone we have to help become very ill and are likely to die soon we also need to be clear about LIFE SUSTAINING TREATMENTS. Both Advance Care Plans and Orders for Life Sustaining Treatments need to be in writing.
Advance Care Planning and Life Sustaining Treatment
Writing in advance what medical treatments we would or would not want if we become too sick to speak for ourselves is extremely important. Writing our wishes enables us to have a voice in medical treatment if we are no longer able to speak for ourselves. They provide information and emotional support to family members who might need to make difficult decisions for us.
The reasons we should think about Advance Care Planning are:
- to give us, our family members and or health practitioners a way to talk about things that matter to us.
- to give us, family members and health practitioners a way to talk about future treatments.
- to avoid conflict. Studies suggest that about half of all families have some conflicts with clinicians and one in four families have conflicts among family members. Most conflicts concern treatment decisions and social issues if we are too sick to speak for ourselves.
Some of the commonly used treatments that might be necessary sometime in the future and should be talked about are listed below:
- CPR, or cardiopulmonary resuscitation, is used to restart a heart and pump it.
- Artificial respiration may be mouth-to-mouth breathing to restart lungs or a breathing machine to keep a person alive.
- Life support is drugs put in a vein to keep the heart pumping and blood pressure from falling.
- Artificial feeding is putting types of food and fluids into a person using a feeding tube or a line in the vein.
- Dialysis is a way to take over for kidneys that are not working.
- Surgery may be used to prolong life in several ways such as cutting away infections or dead muscle, removing tumors, or putting tubes in veins.
- *911* is the phone number people call if they become very sick and the family or caregiver feels the need to call an ambulance or the rescue squad to take the sick person to the hospital. People should talk about calling or not calling 911: would they want emergency life-sustaining treatments at home or in the hospital should they be necessary?
Surveys have examined treatment choices. (See Table Below). The numbers indicate trends that may be helpful when making our Advance Directive. Of course, what a group answering survey questions favors does not predict what an individual may want. Advance Directives also change as people age and their illnesses change.
The Table below shows what a large number answered to some questions about what they would want if they suddenly became seriously ill in two situations:1) their current health; or 2) if they had a very severe stroke or had lost their memory.
| Treatment Desired | "if I am in my current health" | "if I had a severe stroke or had lost my memory" |
|---|---|---|
| Antibiotics | 95% | 75% |
| Short Term Breathing Machine | 90% | 60% |
| CPR (911) | 80% | 40% |
| Dialysis for Kidneys | 75% | 40% |
| Feeding Tube | 60% | 35% |
| Long Term Breathing Machine | 40% | 20% |
The important point of the Table is that there is no "right answer." However, thinking about what we want and putting our desires in writing is always better than having someone else guess what we might want.
If we know we are very sick and nearing death, it is very helpful for those we love and the health professionals who take care of us that our wishes about life sustaining treatment are known. In fact, many states in the United States are now asking Physicians to write very clear Orders about Life Sustaining Treatments (so-called POLST). Unlike an Advance Directive (that provides general instructions to a health care representative for our possible future treatments), Orders for Life Sustaining Treatments provide very clear instructions for current treatment.
The Table below illustrates the common treatments most of us have to think about and indicate whether we want them or not if: 1) we become sicker, 2) we are so sick we cannot feed ourselves, 3) or our heart stops. For these three commons situations that very sick people have to face, do we want a lot of medical treatment or caring treatment to keep us comfortable? For each of the three columns what choice would we make?.
| A FUTURE SITUATION I MAY BE IN | CHOICE: Do not treat very much. Comfort only. Use medicines and good care to keep me comfortable. Do not admit me to a hospital or take me to an emergency room for life sustaining treatments. I never want a feeding tube. No attempt to "bring me back" | CHOICE. Treat some things. Limited extra treatment for comfort may be given in a hospital but do not use breathing or other machines to keep me alive. A feeding tube can be used for a clearly defined and limited time. | CHOICE. Treat most things. Treat me as though I am not nearing death. A long-term feeding tube is acceptable. Restart my heart and breathing. I understand that this may require machines. |
|---|---|---|---|
| If I am much sicker than I am now | |||
| If I am so sick that I cannot feed myself | |||
| If my heart stops or my breathing stops |
What to tell your Health Care Practitioner
It is difficult to correctly guess when serious illness or death will happen, but we all know that it will happen. Most people know that it is important to tell their health practitioner and family what they would want if they were too sick to speak for themselves.
The following steps are important in planning your Advance Directives:
- Gather the information you need to make the best choices for you.
- Talk about end-of-life decisions with your family, friends, doctor, the clergy and others close to you to help decide what is important to for you.
- Prepare and sign Advance Directives that describe your decisions and comply with your state's law.
- Tell your loved ones and health care practitioner about what you want and give them copies of your advance directives. Remember that they and you should call the rescue squad (911)
- If you are already very sick or frail (or know that you will be soon), you should also talk to your doctor about Orders for Life-Sustaining Treatments. Sample POLST form
Other Helpful Information
For additional information (United States):
- www.elderweb.com (diverse-news site of ElderWeb)
- www.nationalhospicefoundation.org (National Hospice Foundation)
- www.aarp.org (AARP)
- www.medicare.gov (Medicare)
- www.agingwithdignity.org
- www.nolo.com (good guides to living wills and legal issues)
For Canada, a living will (POAPC), is commonly used; POLST is not. See example
We have tried to make the How's Your Health error-free. However, those involved in its preparation can not warrant that all of the information is accurate and complete. When you use How's Your Health as a guide for your health and medical care, be sure to discuss any questions about it with your doctor, nurse, or other health care worker.
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Last reviewed: January 2023 © 1997-2023 FNX Corporation and Trustees of Dartmouth College. All Rights Reserved.