Deciding on Your Wishes for Care
Understanding the Medical Terms Used in Living Wills
To decide on your wishes for care at the end of life, it’s important to understand common medical procedures used when an emergency occurs. You don’t need to make these decisions alone; consult your doctor to make the decisions that are right for you. Understand what procedures such as artificial nutrition, hemodialysis, and mechanical ventilation involve, and whether you want them to be a part of your care.
Preparing an advanced directive
Many of us shy away from one very important decision: What type of medical care do I want if I’m too sick, confused, or injured to voice my concerns? While you may be in robust health today, an emergency, such as a car accident or a stroke, could occur. Or you might be diagnosed with a severe, life-threatening illness. At the very least, what will be true for most of us is that our health will eventually decline after a long, full life.
If you haven’t prepared advance directives, medical choices will be left to worried relatives or to a doctor or guardian appointed by a judge, none of whom may have a clear understanding of your values, beliefs, and preferences.
What makes life worthwhile to you—physically, emotionally, spiritually, and intellectually? What would matter most to you during your final weeks or days? What kind of care would you want to receive? Although these questions are complex, and perhaps upsetting, they are well worth your attention.
Here are explanations about common medical procedures that may be performed when a person is incapacitated or at the end of life. As you read, think about whether you can foresee conditions under which you would, or would not, want certain procedures or care.
You needn’t make these important decisions by yourself. We encourage you to talk to your doctor about your goals and get his or her recommendations about what care to seek given your state of health.
When you are unable to swallow anything by mouth, this procedure supplies nutrients and fluids through a nasogastric tube inserted through your nose into your stomach (short-term) or a percutaneous tube inserted directly through your abdominal wall into your stomach (longer-term). Or you could be given nutrients and fluids intravenously—through a vein—if your gut isn’t working properly. Called parenteral nutrition, this is another long-term strategy.
Artificial nutrition may be used as a bridge when the underlying problem is temporary and the person is likely to recover. It may also be used long-term to help keep a person with an irreversible condition alive, although it will not necessarily improve quality of life. In older, frail people, artificial nutrition is not thought to extend life or prevent complications. Those who choose not to have it may wish to avoid the discomfort involved or may wish not to prolong the dying process.
Cardiopulmonary resuscitation (CPR) and advanced cardiac life support
How successful is CPR?
In movies and TV dramas, CPR seems to be astoundingly successful. The reality is less rosy: an overall revival rate no higher than 22% in the hospital, and as low as zero in the community for older, frail individuals.
But there are glimmers of good news. A 2012 New England Journal of Medicine study of nearly 85,000 hospital patients who received CPR after going into cardiac arrest on a ward or in the intensive care unit found that the overall rate of survival-to-discharge increased from 14% in 2000 to 22% in 2009—and fewer survivors suffered brain injury significant enough to affect their daily lives.
If your heart or breathing stops and you become unconscious, CPR can be used to try to resuscitate you. When emergency medical personnel perform CPR, they use three combined techniques:
- Artificial respiration, employing a triangular plastic mask placed over the mouth and nose, which is attached to a tube and bag. The bag is squeezed and released, moving air in and out of the lungs of a person who has stopped breathing.
- Artificial circulation, which entails repeatedly pressing on the chest to squeeze blood out of a heart that no longer is pumping.
- Defibrillation, which involves using a medical device called a defibrillator that delivers an electric shock to the body to reset an abnormal heart rhythm to a normal, steady rhythm.
If these measures fail, the next step is advanced cardiac life support, including intubation and mechanical ventilation, plus drugs to stimulate a stopped or failing heart.
Successful CPR depends on a variety of medical circumstances, including what kind of illness the person has, how severe it is, and how long after cardiac arrest CPR is started. When someone has a terminal illness, the odds of revival are extremely low. Moreover, CPR can injure the body. For example, bruising on the chest is common, and ribs sometimes get broken in the process. Death from cardiac arrest is sudden and mostly pain-free. A sore throat in the aftermath of intubation and ventilation, and soreness and achiness due to defibrillation are common, too.
As part of CPR, an electric shock delivered to the body may restart the heart if it has stopped beating or return it to a normal rhythm if it is beating abnormally. A person’s body jerks when the shock is delivered, but recipients of a shock are usually unconscious, so they don’t feel it. Some people who are sick or dying decide to forgo defibrillation because they simply feel it’s “too much.” Most people who experience defibrillation won’t remember it, though they may feel sore and achy afterward.
When you’re well, your kidneys maintain the right balance of fluids and essential minerals (sodium, potassium, calcium, and others) in your body, and clear wastes from your blood. If your kidneys fail temporarily or permanently, a dialysis machine can mimic these tasks by filtering your blood. Typically, needles are placed in two sites in an arm so blood flows through one tube into the machine to be filtered, then is pumped back into your arm through the second tube.
Dialysis usually requires three weekly sessions, each taking three to five hours, at home or at a clinic. Depending on your overall life situation, you may feel this is well worthwhile, or you may decide to forgo it, which would ultimately lead to death. People who choose not to have hemodialysis may do so because of physical exhaustion, discomfort, and the time involved, particularly if other health issues compromise their ability to lead a meaningful life.
When curative treatments can no longer help or when further treatment seems futile, many people seek comfort care for troubling symptoms like pain or difficulty breathing. Hospice, a medical benefit covered by Medicare and most other health insurance providers, is a program of care designed to deliver this. In 2011, 1.65 million Americans received hospice services, and 45% of people who died in the United States were under the care of a hospice program.
Hospice takes a team approach to care, drawing together the skills of a doctor, nurse, home health aide, social worker, spiritual counselor, and volunteers. You need a doctor’s referral to hospice, stipulating that you have been diagnosed with an incurable condition and are expected to die within six months. That doesn’t always happen, of course, and some people stay with hospice for much longer. It’s worth noting that your doctor may suggest hospice long before you are actively dying. Rather than signal “giving up,” the extra support and compassionate care provided by hospice may be welcomed by you and your loved ones.
- As a hospice patient, you may remain at home, move to a hospice facility if one is available, or receive hospice services at a hospital, assisted living facility, or nursing home.
- The hospice team responds to the wide-ranging needs of the dying person, family, and caregivers.
- Hospice may deliver such helpful supplies or equipment as a hospital bed, oxygen, or medications to help quell pain, anxiety, or infections that interfere with breathing.
- Usually, grief counseling is offered for family and caregivers during the year following a death.
Intensive comfort care (palliative care)
According to a report in the Journal of the American Geriatrics Society, caregivers of hospitalized patients noted that during the last three days of life, almost three in four struggled with distressing symptoms such as nausea, pain, breathlessness, and depression. Whether people die at home or in a hospital or nursing home, significant pain and breathlessness is common in 20% to 40% of cases. Intensive comfort care, also known as palliative care, aims to keep a patient comfortable and pain-free by using a combination of evidence-based measures to treat distressing symptoms.
Often, people choose comfort care through hospice or their current doctors when further curative treatment is no longer helpful or desired.
When a person is unable to swallow anything by mouth, this procedure supplies a solution of water, sugar, and minerals through a tube placed into a vein. If the problem is likely to be short-lived—five days or so—hydration alone may be sufficient to provide necessary liquids and calories; otherwise, artificial nutrition must be considered as well.
Like artificial nutrition, hydration may be used temporarily when the person is likely to recover sufficiently to take fluids by mouth. Or it may be used long-term in the case of an irreversible condition to help keep a person alive, although it will not improve quality of life. People who choose not to have artificial hydration may wish to avoid the discomfort involved or may wish not to prolong the dying process.
A machine called a ventilator or respirator (sometimes called a breathing machine) pushes air into the lungs, replacing or supporting the lungs’ normal function when a person cannot breathe unassisted. Patients on a breathing machine may be conscious or unconscious. A tube attached to the machine is inserted into the nose, mouth, or throat and passed down into the trachea (windpipe). This is called intubation. The discomfort of the tube in the windpipe requires most people to take sedatives, which render them not fully conscious. When the breathing tube is inserted through the nose or mouth, a person cannot talk.
Mechanical ventilation can be used short-term as a bridge to recovery, or long-term. People on mechanical ventilation for longer than a week also need other organ-sustaining treatments, including artificial nutrition and a catheter to remove waste from the bladder. They move their bowels into a bedpan. Bedsores may occur. If a person becomes well enough to come off the ventilator, rehabilitation will be needed. If the breathing tube needs to be used for more than two to three weeks, it will be moved from the nose or mouth and inserted into the windpipe through a surgical incision in the front of the neck (a tracheostomy).
When a person is terminally ill, mechanical ventilation may prolong the dying process, but it canno treat the underlying condition or improve quality of life. People who choose not to be placed on mechanical ventilators may make that decision for several reasons, including:
- Not wanting to be sedated or unable to talk.
- Not wanting their families to see them tied to machines in an incoherent state.
- Not wanting to spend what may be their last days in a hospital bed.
A set of drugs, medical procedures, and machines that can keep a person alive for an indefinite period of time, but which cannot cure a terminal condition, is collectively known as organ-sustaining treatment. A few examples are hemodialysis, mechanical ventilation, and artificial nutrition.
Often this is called “life-sustaining” treatment, though some experts argue that “organ-sustaining” treatment is a more appropriate description. While such treatments can serve as an important bridge to recovery, sometimes they merely prolong death without supporting meaningful life.
Adapted with permission from Advance Care Planning: A guide to advance directives, living wills, and other strategies for communicating health care preferences, a special report published by Harvard Health Publications.