ADVANCED HOSPICE & PALLIATIVE CARE PLANNING
Advance Care Planning: Medical Issues to Consider
By Cheryl Arenella, MD, MPH
What are the varied medical issues that a person should keep in mind in order to be thoughtful and thorough when doing advance care planning? This article will explore several medical options, considering when an intervention is likely to be helpful, when it is unlikely to be helpful, and what the burdens and side effects of a particular intervention are likely to be.
Before getting into an exploration of the medical issues, however, we need to be clear about what is meant by advance care planning.
What is advance care planning?
Advance care planning is a process by which an individual plans for a time in the future when he/she might be unable to make decisions. The person tries to set up a system where his/her treatment preferences will be followed, even if the person is unable to make his/her wishes known at the time. There are several different types of advance care planning, including:
- A Living Will: A simple statement asking for no heroic care in the case that the person is terminally ill.
- A Values History: A statement of values regarding health care in the event of a life-threatening illness.
- A Medical Directive: A set of instructions based on likely scenarios of illness, goals of care, and specific treatments, usually combined with a general values statement.
- A proxy designation, known as a DurablePower of Attorney for Health Care or a Health Care Proxy: A formal legal statement naming the person whom the patient wants to make pertinent health care decisions in the event that the patient is unable to do so. A proxy designation often accompanies one or the other of the preceding three instructional directives. The responsibility of the proxy is to make the treatment decisions that the patient would make if he/she were able to express a preference. For this reason, it is imperative that when a person chooses a proxy for health care decisions, the person discusses with the proxy what that person’s wishes would be concerning options for treatment interventions.
In order to execute a written instructional advance directive, or to have an informed discussion with the chosen health care proxy, the person doing the advance care planning needs to understand the medical issues that form the basis for making health care decisions.
Some questions to consider when doing advance care planning include:
- Is my medical condition at the time reversible or irreversible?
- Do I at that time have a non-curable chronic medical condition that will progress to end stage disease*?
- Am I in a coma, or a persistent vegetative state?
- Is meaningful recovery possible or unlikely?
*A chronic condition is considered to be “end stage” when optimal medical care can no longer stabilize the medical condition of the person who suffers with the disease. The person has frequent medical decompensations (episodes when the disease worsens to the point that the person requires hospitalization). The disease impacts the person’s ability to function in everyday life, and functioning deteriorates over time. The burden of uncomfortable or even painful symptoms on the person is quite high.
Desired interventions will likely differ depending on the answers to the above questions.
In addition, the benefits and the burdens of the intervention will need to be considered:
Will the intervention under consideration…
Help me to live longer?
Improve my quality of life?
Enable me to do more things?
Lessen my suffering?
What kind of burdens and side effects will the proposed treatment impose?
These basic questions can be used in discussions with health care providers to try to clarify various scenarios that may occur in the future.
A person should also give thought to whether or not he/she wishes to donate his or her body or organs, or undergo an autopsy.
Although the process of advance care planning may seem daunting, it is well worth the effort. The person can feel more in control of the future, and more confident that decisions will be made in accordance with his/her wishes. A significant burden is lifted from the decision maker and family who are trying to sort through various treatment options for the one they love. Health care professionals caring for the patient can feel confident that they are following the directions of a patient they care about.
About the author: Dr. Cheryl Arenella does health care consulting for programs focused on improving end-of-life care. She has over 20 years of experience in the field of Hospice and Palliative Medicine. She is a former trustee of the American Board of Hospice and Palliative Medicine and served for many years as a Medical Director for a large Medicare certified hospice, where she provided medical oversight, direct patient care and administrative program support.
Courtesy of www.americanhospice.org
THELIGHTHOUSE COMMUNITY HOSPICE
ADVANCED DIRECTIVE FORMS & RESOURCES
To obtain more information about advance directives for hospice and palliative care and the forms you can use, visit the following websites:
- Five Wishes – Approved for use in a majority of states (though not all), this comprehensive legal form enables you to give direction to your doctor and family about how you want to be treated if you are unable to communicate. There is a nominal fee to order the form. A non-printable copy may be viewed without cost.
- Caring Connections – This site provides information to learn more about end-of-life resources including advance care planning. Free advance directive documents and instructions for each state are available.
What are some medical treatments that need to be understood when undertaking advance care planning?
Hospice Directives
Cardiopulmonary resuscitation (CPR) Do you want a "Do Not Resuscitate" Order ?
“Chemical code”What does it involve? Occasionally, a person will opt not to have mechanical resuscitation, but still desires the administration of medications intravenously to restart the heart, correct the heart rhythm, or support failing blood pressure.
Ventilator supportWhat does it involve? A person who is unable to breathe well enough to get a sufficient amount of oxygen to the body may need to have a tube inserted down the nose or throat, or surgically through the neck, into the trachea.
Continuous Positive Airway Pressure (CPAP) and Bilevel Positive Airway Pressure (BiPAP)What does it involve? The person who has difficulty breathing may use a mask over the nose only or over both nose and mouth, connected by tubes to a machine that delivers positive air pressure to the person’s airways.
DialysisWhat does it entail? If a person develops renal failure, toxins are not filtered out of the blood by the kidneys and build up in the body. A dialysis machine filters the toxins out of the blood.
Total Parenteral Nutrition (TPN)What does this involve? A person who is not able to take food by mouth, or who has a non-functioning gastrointestinal (GI) tract, may be given basic nutrients through a catheter (small tube) inserted into a vein.
Intravenous fluids (IV fluids)What does this involve? A person who becomes dehydrated due to an inability to take enough fluids by mouth or an excessive loss of fluids through vomiting, diarrhea, or through the skin may have fluids replaced by having a catheter placed in the vein delivering solutions to the body.
Enteral tube placementWhat does it entail? A tube may be placed either through the nose into the stomach or inserted surgically directly into the gastrointestinal tract through the abdominal wall.
SurgeryWhat is involved? Depending on the type of surgery, surgical procedures can be more or less burdensome, have more or fewer complications, and be more or less debilitating.When should surgery be considered?
.Transfusions with blood and blood productsWhat is involved? The person who is anemic, or who has a deficiency of a certain type of blood product, can have blood or blood products transfused through a catheter placed in a vein.
Use of antibioticsWhat is involved? Antibiotics are given to fight infections in a person’s body. They can be given by mouth or, for more severe infections, injected intramuscularly (into a muscle) or intravenously (into a vein).
What about implanted pacemakers and defibrillators?These days, many people have had surgical placement of pacemakers to regulate the rate of the heart or implanted defibrillators that deliver a “shock” to the heart if it stops or goes into a dangerous rhythm.
In addition to sorting through which treatments may not be desired, a person doing advance care planning should indicate what treatments he/she desires:
- Having skin care with body lotions
- Having routine moistening of mouth and eyes when drying occurs
- Having loved ones be able to visit at any time
- Having gentle massage and range of motion to prevent stiffness
- Having favored music played
- Etc.