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.
What are some medical treatments that need to be understood when undertaking advance care planning?
Cardiopulmonary resuscitation (CPR)
What does it involve? A person whose heart has stopped, and who has stopped breathing, undergoes interventions to restart the heart and the breathing: repetitive mechanical chest compressions (a person or machine pressing down hard on the chest wall) are carried out to squeeze blood out of the heart and into the circulation; mechanical ventilation (forcefully blowing air into the patient’s lungs by a person or by using a mask) is carried out to inflate the lungs and deliver oxygen to the bloodstream; cardioversion (passing an electrical current through the heart to restart it or convert the heart rhythm) may be done; injection of cardiac (heart) medications of various types into the bloodstream or directly into the heart may be necessary.
When is CPR likely to be helpful? CPR was originally developed for persons who are otherwise healthy who suffer a sudden arrhythmia or develop a clot blocking an artery in the heart. In this situation, restarting the heart enables the person to reach the hospital for definitive treatment. The outcome of a return to normal function is attainable.
When is CPR not likely to be helpful? If the person is very ill with end stage cancer or end stage chronic illness, CPR is unlikely to help. The likelihood of a successful resuscitation is very low; the likelihood that those resuscitated will survive to be discharged from the hospital is minimal; the likelihood that the few discharged from the hospital will return to previous functioning is nil.
What are the burdens and side effects of CPR? It is not unusual, particularly for a frail elderly person, for rib fractures to occur. Vomiting with aspiration of the vomit into the lung and subsequent pneumonia are a possibility. Brain injury due to prolonged absence of oxygen to the brain is also fairly common. The person frequently requires placement on a ventilator to be able to breathe subsequent to the resuscitation.
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.
When is it likely to be helpful? If the person was fairly healthy and functional but suffers a sudden rhythm disturbance or dangerous fall in blood pressure that is easily reversed with administration of the medications, and the condition is not frequently recurring, a “chemical code” may be a reasonable intervention.
When is it not likely to be helpful? If the person’s heart is so damaged that it requires the constant administration of intravenous medications to maintain marginal function, and the person is not able to resume a measure of independent functioning, repeated or continuous “chemical codes” may not be desirable.
What are the side effects? Some medications used in chemical codes themselves cause cardiac arrest or arrhythmias. Others may cause edema (swelling) in the limbs, abdomen, and lungs.
What 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. This would then be connected to a ventilator (breathing machine), which would breathe for the patient.
When is it likely to be helpful? If a person has a temporary inability to breathe well enough, being placed on a ventilator can sustain that person until the condition causing the problem is reversed.
When is it not likely to be helpful? If a person has an irreversible process causing poor functioning of the lung (e.g., end stage chronic obstructive pulmonary disease (COPD), end stage congestive heart failure (CHF), or end stage pulmonary fibrosis), the likelihood that the person will be able to be removed from the ventilator and resume normal functioning is very low.
What are the side effects? A pneumothorax (leak of air from the lung into the chest cavity) is possible; pneumonia from bacteria in the tubing can occur; immobility of the patient due to being attached to the machine can lead to psychosis, skin breakdown, and progressive weakness; the tube in the trachea can cause erosion of the trachea; and generally the person is not able to speak.
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. This positive pressure helps keep the airways open and decreases the work of breathing for some patients.
When is CPAP or BiPAP likely to be helpful? A person with muscular disease of the chest wall (e.g., ALS or Lou Gehrig’s Disease) or a person with Chronic Obstructive Pulmonary Disease (COPD) may tire considerably from the work of breathing. Intermittent use of CPAP or BiPAP may enable this person to recover, get needed sleep and rest, and resume functional capacity when off the machine. Also, if the person has temporary intermittent spells of not breathing (apnea), the machine may trigger and stimulate breathing on the part of the person.
When are these treatments not likely to be helpful? If the person requires the CPAP or BiPAP continuously, and is still struggling with feelings of breathlessness, these treatments may no longer be helpful.
What are the side effects? At times, a person is unable to get used to wearing the mask. The mask can cause skin breakdown around the nose or mouth. Air can be forced into the stomach, causing distress.
What 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. The person needs to have a way to take blood from the body, pass the blood through the machine, and return cleansed blood to the body. Usually, an internal connection from an artery to a vein is created surgically in the person’s arm.
When is dialysis helpful? In a person who functions well when the toxins are cleared from the body, dialysis may enable the person to live productively. Dialysis is especially useful if the person is awaiting a kidney transplant.
When is dialysis not useful? If a person has irreversible multi-organ failure, not just kidney failure, and is end stage, dialysis is not indicated.
What are possible adverse effects of dialysis? The treatment can be burdensome, consuming many hours a day several times a week. The internal shunt can become infected. Infection can become generalized. The internal shunt can become blocked by clots, in which case the person needs additional surgery to undergo “shunt revision” (occasionally, this happens over and over). The person can have fluid overload or fluid lack after the procedure. Body chemistry can go out of balance. Anemia (low red blood cell count) can occur.
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. Often, the catheter is permanently or semi-permanently placed in a major vein.
When is it helpful? If the person has a reversible condition that is preventing him/her from eating, and has a GI tract that is not able to absorb nutrition, then TPN may be helpful.
When is TPN not helpful? If a person has end stage cancer or end stage chronic illness accompanied by anorexia (lack of appetite) and cachexia (muscles wasting away and losing weight), TPN has not been found to help the person live longer, feel stronger, or gain weight.
What are the side effects? Sepsis (widespread infection throughout the body) can occur, as can an imbalance of body chemistry that can cause heart rhythm disturbances; low or high blood sugar can occur; the person can develop fluid overload and edema (swelling) of the limbs, abdomen and lungs; nausea and vomiting can occur; immobility of the patient can cause problems as well.
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.
When is this helpful? If the cause of a person’s dehydration is reversible, and rehydration will help the person to feel better and function better, intravenous (IV) hydration makes sense.
When is it not helpful? A person with an end stage illness who has stopped eating and drinking because death is near will rarely benefit from IV hydration. A person cannot live indefinitely only on IV hydration.
What are the side effects? The pain of insertion of the IV line is burdensome. The person can retain fluid that may gather in the limbs or the lungs. Fluid in the lungs can cause distress with breathing. Frequent urinating in a bedbound incontinent patient can cause irritation of the skin and sores. Nausea and vomiting may occur as well.
Enteral tube placement
What 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. This tube may be used for administering food or medicine to the person, or it may be used to decompress the bowel if a bowel blockage is causing the buildup of air or gastrointestinal contents.
When is this procedure useful? If the person has a temporary and reversible blockage in the bowel, or a temporary inability to eat by mouth, placing an enteral tube can help.
When is this procedure not useful? If the person is suffering from end stage dementia, or is able to eat but is not hungry due to cancer or other severe disease, enteral feeding is rarely helpful. A person who is in an irreversible coma or a persistent vegetative state and is thus unable to meaningfully relate to his/her environment or loved ones has the right (through his/her proxy) to refuse this procedure, as well as the right to refuse artificial feedings.
What are the side effects? Nasogastric tubes are very uncomfortable to place; can cause breakdown of the skin, the nasal septum, and the back of the throat; can lead to infection; and can cause aspiration pneumonia (contents of the stomach reflux into the mouth and then down the trachea into the lungs, causing pneumonia). A person who is placed in restraints to keep from dislodging the tube is prone to skin breakdown and agitation. Gastric tubes placed though the abdomen expose the person to the risks of surgery, and infection, and likewise can cause aspiration pneumonia.
What 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? If the surgery is minor, and/or the condition is reversible, and/or the suffering caused by the condition is major, surgical correction, even in the person with serious underlying chronic illness, may make sense. Benefits and burdens need to be assessed.
When should surgery be avoided? If a person has end stage disease and is not likely to survive past the usual time period for recovery from the surgery to benefit from the intervention, surgery should not be done.
What are possible adverse effects? Possible adverse effects of surgery include death due to anesthesia or surgery, post-surgical pain, infection, and debility after surgery with possible prolonged time to recovery.
Transfusions with blood and blood products
What 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. The person needs to be “typed and crossed” (i.e., the blood type has to be checked for compatibility of the blood products he/she will receive), which requires having a blood sample drawn.
When is the procedure useful? Whenever a normally healthy person has an acute loss of blood, transfusion may be warranted. A person may have a reversible anemia or other reversible deficiency, such as low platelets, that can be corrected through transfusion. Especially if the person is having distressing symptoms, such as extreme fatigue or shortness of breath due to anemia or bleeding due to low platelets, transfusion should be considered.
When is transfusion not useful? If transfusions fail to reverse the symptoms of fatigue, weakness, shortness of breath, and bleeding, they should be discontinued. If the person is very end stage (i.e., the person is unable to function or death is expected within weeks) with chronic illness, it may not be in that person’s best interest to arrange for transfusion.
What are possible side effects? A person may suffer from a transfusion reaction, which is quite distressing and can be life-threatening. A person with borderline heart function can develop heart failure after a transfusion. Edema (swelling) in the limbs, fluid in the lungs, and severe shortness of breath may occur.
Use of antibiotics
What 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).
When should antibiotics be given? If a person is otherwise healthy and treating the infection with an antibiotic will return the person to health and good function, antibiotic administration makes sense.
When should antibiotics be withheld? If a person is very end stage, sometimes infection should not be treated with antibiotics in order to avoid prolonging the dying process. Especially if the person has decided not to return to the hospital, giving intravenous antibiotics may not make sense.
What are the side effects? A person may have an allergic reaction, nausea and vomiting, diarrhea, pain at the site of IV insertion, and complications due to immobility. Development of severe gastroenteritis due to an organism called C difficile is also possible.
Admission to the Intensive Care Unit (ICU)
What is involved? The intensive care unit is generally meant for a person who is reversibly critically ill who desires full resuscitation should cardiorespiratory arrest occur. This person will benefit from very invasive technology to reverse critical illness. Close monitoring of the patient, electronically and by medical personnel, is the norm.
When should ICU care be considered? If the person’s condition is reversible, and the person is willing to bear the burdens of ICU technology, ICU care can be life-saving.
When should ICU care be avoided? If a person has end stage disease, does not desire resuscitation, and his/her goals of care are palliative, especially if he or she wants to remain at home with family, ICU care is inappropriate.
What are the burdens of ICU care? Isolation and immobilization of the patient are common, as are disruption of the patient by light, noise, diagnostic tests, and therapeutic interventions which are uncomfortable and possibly painful. A frail patient is prone to develop ICU psychosis. Visitation by family and friends is typically very restricted.
When should hospitalization be considered? Hospitals are useful for care of severely ill patients who have reversible conditions when the care cannot be managed in an outpatient setting.
When should hospitalization be avoided? There may come a time when hospitalization no longer makes sense. If a person has end stage disease and the priority is to remain home with family, hospitalization should be avoided.
What are the burdens of hospitalization? Burdens of hospitalization include exposure to hospital-borne infections, disruption of routine, lack of privacy, sleep disruption, burdensome tests and treatments, and separation from loved ones. Frail elderly may become delirious, anxious, and agitated when taken out of familiar surroundings.
What is involved? Diagnostic tests may include blood tests, imaging tests (X-rays and scans), or invasive testing (e.g., looking into the esophagus, lung, stomach, or bowel with scopes and taking biopsies through the scopes).
When should they be done? Generally, diagnostic tests should only be done if there is a reasonable chance that the condition found can be reversed, and then only if the patient is well enough to withstand the treatment being contemplated.
When should diagnostic tests be avoided? For a patient who is end stage, all “routine” testing should be discontinued. If other testing is contemplated, the burden of obtaining the test versus the expected benefit from doing the test needs to be taken into consideration. If interventions are not planned, diagnostic testing done “just to see” if a condition exists is not warranted.
What are the adverse effects? Even simple blood tests have burdens. Venipuncture is painful, and in a frail patient, multiple sticks are often necessary to obtain an adequate amount of blood to run the testing. Scans with contrast dye can cause allergic reactions. A person may become claustrophobic in scanning machines, causing severe anxiety. Scoping has the attendant risk of perforation of the body part being scoped. Sore throat can occur if scoping is through the throat. Infection can occur. Bleeding can occur.
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. If a person with such an implanted device becomes terminally ill, and the goal is for comfort care only, the device can be turned off rather easily by the use of a magnet in close proximity to the device. A person can include instructions in his/her advance directive to turn off a pacemaker or a defibrillator at the appropriate time.
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
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.
To obtain more information about advance directives and 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.
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.