Life support: A temporary bridge

If a person has a curable condition, life support can be very helpful on a temporary basis. It gives the body a chance to heal. Once your loved one is strong enough, then the intervention can be stopped. Health will have been restored.

Prolonging the dying process?
In the case of a terminal illness, however, life-support measures often just prolong the dying process, simply postponing a death that is inevitable. This may be useful if out-of-town relatives need time to travel to say good-bye. But these measures are not simple. They often have risks and side effects that can negatively affect quality of life for those who do survive. Life support is not the easy fix often portrayed on television.

Plus, starting life support automatically introduces the difficult question of when to stop.

How to decide?
Among seriously ill patients, 96% indicate it’s important to them to know what to expect about their physical condition and what to expect during the illness and during any treatments. As a decision maker for your loved one, it will help you understand what they would prefer in terms of life support and the quality of life afterwards, especially as they are nearing the natural end of their lives.

It’s always useful to start by reviewing the facts for each intervention.

  • What are the benefits? Does it relieve suffering? Help the body heal and regain function? Enhance quality of life?
  • What are the risks? Is it painful? Are there side effects? Does it increase the chance of infections? Does it subtract from quality of life?
  • How likely is it to cure the problem? Will it enable your loved one to return to a reasonably healthy state? Does it simply prolong dying?
  • What are your loved one’s spiritual or religious beliefs? If your relative follows a particular faith tradition, these values will also become part of the decision.

Facts about commonly used life-support measures are described below. They may sound grim and extremely final. Remember, when it comes time to decide, the situation will be very different from where you are now in the present moment.

What do others think?
These decisions are very personal. Still, sometimes it helps to hear what others think. No one should feel pressured to make a particular choice. Hearing what others think, however, can help your loved one clarify their own response. After sharing the facts about each type of life-support measure below, we have included a sample opinion in italics to help you and your relative discuss the issue.

There is no right or wrong answer!
And there are many shades of gray. The important part is what your loved one feels is right for them. While reading the sample opinion, ask the person you care for to consider:

  • Do you agree? Disagree?
  • How might you change that statement to better fit your opinion?

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CPR (cardiopulmonary resuscitation)

Many of us have seen television dramas in which the team does CPR on a patient, bringing them miraculously back to life. The implication is that the patient is all better now and can go home and pick up where they left off. In the context of a generally healthy person who suddenly has a heart attack, CPR can definitely result in years or even decades of healthy, active living. But in the context of advanced age and chronic or terminal illness, it’s a very different picture. The aftermath is rarely if ever referred to on TV.

The procedure itself. Although CPR could mean the difference between life and death, it is not a gentle procedure. The chest bone is pushed down at least two inches into the body cavity, one hundred times a minute. Broken ribs, bruised lungs, internal bleeding, and damage to the airway and internal organs are common.

Brain damage is also an issue. While the heart has not been beating, the brain has been starved of oxygen. In addition to a painful recovery from the intensity of the procedure, 30% of survivors will experience significant brain disability.

Quality of life is clearly compromised for survivors. Of the 75% of CPR survivors who were able to live independently upon admission to the hospital, only 20% were able to do so postdischarge. Survivors also report anxiety, depression, and posttraumatic stress from the procedure. As many as half of survivors say they wish they had not been given CPR, even though they know it saved their life.

What is the survival rate? When older adults are asked, it turns out they believe the survival rate to be about 75%. This closely matches the roughly 70% who survive on TV dramas. In actual fact, on average, 19% of patients ages seventy to seventy-nine years survive long enough to be discharged from the hospital. (The survival rate drops to 15% for people in their eighties and 12% of people age ninety or more.)

What about long-term survival?
Six months following the procedure, only 6% to 21% of those survivors in their seventies were still alive. While age is a contributing factor, more relevant was the underlying health of the patient. Frail individuals and persons with heart failure, COPD, cancer, or liver problems, for instance, have six-month survival rates closer to 2% to 5%. CPR is a bridge to a treatment or intervention. But if a person has heart failure or cancer before CPR, they still have it afterwards. They are brought back to the same situation, with some additional setbacks and no change in the underlying disease.

Here’s one person’s opinion:
“I only want CPR if I have a reasonable chance of recovery to a healthy state. For instance, if I have a sudden heart attack but have been healthy enough to lead a fairly functional life, do CPR. If I am sick with cancer and have a slim chance of beating it, do not do CPR if my heart stops. Let me go.”

As you talk with your decision maker about this issue, do you agree or disagree with the opinion above? How might you modify it to more closely reflect your own feelings and beliefs?
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Mechanical ventilation (breathing machine)

A ventilator is a life-support machine that forcibly pushes air into the lungs when the patient can’t breathe on their own. The ventilator brings in oxygen. It removes carbon dioxide. And it keeps the lungs inflated (as opposed to collapsed). Mechanical ventilation is not a treatment to cure an illness. It just serves as a bridge to give medications and other treatments time to do their work. It can ease the distress of breathing so the body can focus on healing itself. Ventilators are commonly used for a short period in the context of surgeries. Or, for instance, the respiratory distress that accompanies severe COVID-19. Ventilators can also be used for long-term conditions such as a coma.

The procedure itself. There are several types of ventilators: They can look like a tube inserted down the throat or a face mask secured around the nose and mouth, like a CPAP machine. With the tube method, the patient will be given medication to relax and to prevent them from moving around while the tube is inserted down the throat and into the trachea (airpipe at the top of your lungs). The tube is then attached to the ventilator. If a patient is likely to need ventilation for two weeks or more, the doctor may cut a hole in the trachea (about at collarbone level) and insert the tube that way. If a person needs ventilation, they are typically moved to the Intensive Care Unit (ICU). This way they can be monitored very closely.

What it’s like to be on a ventilator. Patients are typically put on a sedative (relaxant) for as long as they are on the machine because it’s quite uncomfortable. This may mean the patient is groggy most of the time. They often feel confused. Survivors report memories of things happening around them seemed surreal, like a weird dream.

The airway will need to be suctioned periodically to remove mucus. Suctioning may make the patient cough or gag. They will probably also need a tube put through the nose and into the stomach to provide liquid nutrition since they won’t be able to eat for the time they are on the ventilator. They will get fluids delivered through an IV, usually in the arm. Patients are often put in a sitting position. They may or may not be able to walk with help if sedation is not required.

Patients are not able to talk because of the tube. Coughing or crying will be uncomfortable as the machine pushes air to its own rhythm. The tube is uncomfortable. If it gets to be too much, doctors may recommend sedation to essentially keep the patient asleep. They may also need to tie the patient’s arms down so they don’t try to pull the tube out.

Risks of ventilation. While a ventilator can do wonders to keep a patient breathing, it does have downsides. Patients get infections if bacteria move into the lungs via the tube. Ventilation is not gentle on the lungs. All that pressure can cause damage, including a hole, causing the lung to collapse. It can be hard on the heart to be on a ventilator. Also, the kidneys. Once on a ventilator, some people will never be able to go off it. They lose the ability to breathe on their own. One-quarter of survivors also experience posttraumatic stress disorder (PTSD) stemming from drug-affected memories of the ICU.

Survival rates and quality of life. This is difficult to determine. It depends on the underlying cause for ventilation. In a review of hospital records, 63% of patients who received mechanical ventilation survived to be discharged (37% did not). Of those who survived, 68% passed away within the year. Less than one-quarter of survivors were able to return home. Over three-quarters of survivors (78%) were discharged to facilities. More than half of survivors (55%) experienced new or worsening physical challenges such as being bedbound, while 40% continued to need ventilation and 68% reported a worsening quality of life.

Ventilators for those in the advanced stages of serious illness. A decision for a frail individual with an advanced serious illness needs to factor in not only survival rates, but the likely aftermath. More often, ventilation simply prolongs the moment of death while also introducing an uncomfortable and distressing experience for a loved one’s last hours or days. Plus, at some point, someone needs to literally make the decision to “pull the plug.” That can be very emotionally difficult.

Choosing ventilation may be appropriate at the end of life if you believe it’s important to the patient to give family members time to arrive from far away. But the patient won’t be able to talk and they may not even be very conscious. Depending on the underlying disease, a seriously ill individual who needs a ventilator usually dies within minutes or hours of its removal. A sedative can be given so there is no anxiety or distress as their oxygen level diminishes and they simply slip away.

Here’s one person’s opinion:
“I would be willing to go on a ventilator for a limited time. Say, four days. This is if the doctors felt I just needed a little help to get over the hump until I could breathe on my own again. If it’s determined that my body will not breathe on its own off the ventilator, do not even start the process.”

As you talk with your decision maker about this issue, do you agree or disagree with the opinion above? How might you modify it to more closely reflect your own feelings and beliefs?
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Artificial nutrition ("tube feeding")

“Tube feeding” can provide a balanced formula of nutrients if a person is unable to swallow. A nasogastric tube can be placed down the nose and into the stomach. This is appropriate if the assistance is expected to be needed for one month or less. If longer, a permanent tube can be inserted surgically through the abdomen. Another surgery will be required to remove it.

Tube feeding can be a short-term solution to a sudden illness with a good chance of recovery. It is also used to help people who are in a coma but expected to recover. Where the issue is most difficult is in the case of long-term conditions, such as advanced dementia, when eating no longer comes naturally. (The patient forgets to eat, or how to eat, chew, and swallow.) Artificial nutrition can add months to the life of someone who would otherwise die a natural death.

Risks and quality of life. Tube feeding can be a source of infections. It can also be very bothersome. People with advanced dementia frequently try to pull out the tube. (It’s uncomfortable and they don’t understand the reason for it.) Sometimes their hands have to be tied to the bedrails to keep them from succeeding. Such restraint strategies become distressing in themselves.

Alternatives. One alternative to artificial feeding is compassionate hand feeding. This involves kind, human contact with spoonful-by-spoonful feeding and coaxing to eat, chew, and swallow completely. Help may be required to address choking on foods that start to go down the windpipe into the lungs. There is also a tendency for patients to tuck food away in their cheeks. This needs to be removed before the feeding session is over as it too can cause choking and infection. Hand feeding might be possible at home but is difficult to request in a facility context. Labor shortages mean there often isn’t the staff time to dedicate to this type of care. Hand feeding also carries some risk of infection.

The experience of refraining from tube feeding. Near the end of life, artificial nutrition prolongs the dying process. Without artificial feeding, a seriously ill person who is no longer able to eat naturally will die painlessly in a matter of days or a week or two. We know this based on what dying people report when they voluntarily decline food offered by families. They just don’t have the energy and appetite to eat.

There may be some thirst, but this can be alleviated with sprays or ice chips. Over the course of a week, the patient will experience weakness and generally sleep more and more. They may experience delirium or hallucinations (see objects or people that others in the room don’t see). They usually lapse into a coma a few days before death and appear to pass peacefully.

Survival rates and quality of life. Of course, it depends on the reason a patient is not able to feed themselves. Between 73% and 98% of those who receive artificial nutrition are still alive after a month of tube feeding. After six months, roughly half will have passed away. There is no way to measure the effect on quality of life, especially since patients with advanced dementia are generally unable to communicate their experiences.

As with other life-support measures, this is not a cure. Dementia, for instance, will continue to progress, and removing the tubes will simply return the patient to their state of disease (minus the irritation of tubes or restraints).

Making the decision. The decision to begin artificial feeding is highly individual. It’s often difficult for families to decide against it unless they know ahead of time what their loved one would have wanted. Since death is a likely outcome anyway—it’s just a matter of when—many families decide that the poor quality of life is not worth prolonging the inevitable. This is especially true if the patient is in pain or distress, calling out that they want to go home, etc.

The decision not to start tube feeding is made easier when families recognize that it will mean a peaceful passing and is what would happen in the context of a “natural death.”

For others, there are faith-based and emotional reasons to prolong life, so they decide to go ahead with tube feeding. You may wish to consult the doctor and a speech pathologist (experts in throat musculature) to see if there is any possibility it could be a short-term solution that could result in the patient being able to feed themselves again. If the patient has an advanced directive with a “living will” (instructions about their preferences near the end of life), it will give you a sense of which way THEY would prefer to go.

Here is one person’s opinion:
“If I am generally happy with my life, despite dementia, please do go ahead and start tube feeding. But if life becomes obviously distressing for me with the tube, please remove it and go to compassionate hand feeding. I believe that God will take me when it’s my time. Until then, do what needs to be done.”

As you talk with your decision maker about this issue, do you agree or disagree with the opinion above? How might you modify it to more closely reflect your own feelings and beliefs?
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