5. Understanding Health Care Decisions

/Home/Caregiving and Alzheimer's/Caregiving for Different Alzheimer's Stages/5. Caregiving for End-of-Life Alzheimer's Patients/Booklet: End of Life: Helping with Comfort & Care

It can be overwhelming to be asked to make health care decisions for someone who is dying and no longer able to make his or her own decisions. It is even more difficult if you do not have written or even verbal guidance (see Planning for End-of-Life Care Decisions). How do you decide what type of care is right for someone? Even when you have written documents, some decisions still might not be clear.

Two approaches might be useful. One is to put yourself in the place of the person who is dying and try to choose as he or she would. That is called substituted judgment. Sheila’s ninety-year-old mother, Esther, was in a coma after having a major stroke. The doctor said damage to Esther’s brain was widespread and she needed to be put on a breathing machine (ventilator) or she would probably die. The doctor asked Sheila if she wanted that to be done. Sheila remembered how her mother disapproved when an elderly neighbor was put on a similar machine after a stroke. She decided to say no, and her mother died peacefully a few hours later. Some experts believe that decisions should be based on substituted judgment whenever possible, but decision-makers sometimes combine that with another method.

The other approach, known as best interests, is to decide what would be best for the dying person. Jim’s father, Sam, is eighty and has lung cancer, as well as advanced Parkinson’s disease. He is in a nursing facility and doesn’t seem to recognize Jim when he visits. Sam’s doctor suggested that surgery to remove part of a lung might slow down the course of the cancer and give Sam more time. But, Jim thought, “What kind of time? What would that time do for Dad?” Jim decided that putting his dad through surgery and recovery was not in Sam’s best interests.

If you are making decisions for someone at the end of life and trying to use one of these approaches, it may be helpful to think about the following:

* Has the dying person ever talked about what he or she would want at the end of life?
* Has he or she expressed an opinion about how someone else was being treated?
* What were his or her values in life? What gave meaning to life? Maybe it was being close to family—watching them grow and making memories together. Perhaps just being alive was the most important thing.

As a decision-maker without specific guidance from the dying person, you need as much information as possible on which to base your actions. You might ask the doctor:

* What can we expect to happen in the next few hours, days, or weeks?
* Why is this new test being suggested?
* Will it change the current treatment plan?
* Will a new treatment help my relative get better?
* How would the new treatment change his or her quality of life?
* Will it give more quality time with family and friends?
* How long will this treatment take to make a difference?
* If we choose to try this treatment, can we stop it at any time? For any reason?
* What are the side effects of the approach you are suggesting?
* If we try this new treatment and it doesn’t work, what then?
* If we don’t try this treatment, what will happen?
* Is the improvement we saw today an overall positive sign or just something temporary?

It is a good idea to have someone with you when discussing these issues with medical staff. Having someone take notes or remember details can be very useful during this emotional time. If you are unclear about something you are told, don’t be afraid to ask the doctor or nurse to repeat it or to say it another way that does make sense to you. Do not be reluctant to keep asking questions until you have all the information you need to make decisions. Make sure you know how to contact a member of the medical team if you have a question or if the dying person needs something. You may want to get pager numbers, email, or cell phone numbers.

Sometimes the whole family wants to be involved in every decision. Maybe that is the family’s cultural tradition. Or, maybe the person dying did not pick one person to make health care choices before becoming unable to do so. That is not unusual, but it is probably a good idea to choose one person to be the spokesperson and the contact person when dealing with medical staff. The doctor and nurses will appreciate answering questions from only one person. Even if one family member is named as the decision-maker, it is a good idea, as much as possible, to have family agreement about the care plan. If you can’t agree on a care plan, a decision-maker, or even a spokesperson, the family might need to hire a mediator, someone trained to bring people with different opinions to a common decision. (See To Learn More below.) In any case, as soon as possible after the doctor says the patient is dying, the family should try to discuss with the medical team what approach to end-of-life care they want for their family member. That way, decision making for crucial situations can be planned and does not have to be done quickly.


ISSUES YOU MAY FACE

Maybe you are now faced with making end-of-life choices for someone close to you. You’ve thought about that person’s values and opinions, and you’ve asked the health care team to explain the treatment plan and what you can expect to happen. But there are other issues that you need to understand in case they arise. What if the dying person starts to have trouble breathing and a doctor says a ventilator might be needed? Maybe one family member wants the health care team to “do everything” to keep this relative alive. What does that involve? Or, what if family members can’t agree on end-of-life care, or they disagree with the doctor? What happens then?

Here are some common end-of-life issues like those—they will give you a general understanding and may help in your conversations with the doctors.

>> If we say “do everything,” what does that mean? This means that if someone is dying, all measures that might keep vital organs working will be tried—for example, using a machine to help with breathing (ventilator) or starting dialysis for failing kidneys. Such life support can sometimes be a temporary measure that allows the body to heal itself and begin to work normally again. It is not intended to be used indefinitely in someone who is dying. “Doing everything” does not include medical treatments intended to cure a medical condition, such as surgery or chemotherapy.


>> What can be done if someone’s heart stops beating (cardiac arrest)? CPR (cardiopulmonary resuscitation) can sometimes restart a stopped heart. It is most effective in people who were generally healthy before their heart stopped. In CPR, the doctor repeatedly pushes on the chest with great force and periodically puts air into the lungs. Electric shocks (called defibrillation) may also be used to restart the heart, and some medicines might also be given. Although not usually shown on television, the force required for CPR can cause broken ribs or a collapsed lung. Often, CPR does not succeed, especially in an elderly person who is already failing.


>> What if someone needs help breathing or completely stops breathing (respiratory arrest)? Sometimes doctors suggest using a ventilator (a respirator or breathing machine)—the machine forces the lungs to work. Initially, this involves intubation, putting a tube attached to a ventilator down the throat into the trachea or windpipe. Because this tube can be quite uncomfortable, people are often sedated. If the person needs ventilator support for more than a few days, the doctor will probably suggest a tracheotomy, sometimes called a “trach” (rhymes with “make”). This tube is then attached to the ventilator. This is more comfortable than a tube down the throat and may not require sedation. Inserting the tube into the trachea is a bedside surgery. A tracheotomy can carry risks, including collapsed lung, plugged tracheotomy tube, or bleeding.


>> How can I be sure the medical staff knows that we don’t want efforts to restore a heart beat or breathing? As soon as the decision that medical staff should not do CPR or other life-support procedures is made by the patient or the person making health care decisions, the doctor-in-charge should be told of this choice. The doctor will then write this on the patient’s chart using terms such as DNR (Do Not Resuscitate), DNAR (Do Not Attempt to Resuscitate), or DNI (Do Not Intubate). If end-of-life care is given at home, a special “non-hospital DNR,” signed by a doctor, is needed. This ensures that if emergency medical technicians (EMTs) are called to the house, they will respect your wishes. Without a non-hospital DNR, in many places EMTs are required to perform CPR and similar techniques when called to a home. Hospice staff can help determine whether a medical condition is part of the normal dying process or something that needs the attention of EMTs. DNR orders do not stop all treatment. They only mean that CPR and a ventilator will not be used. These orders are not permanent—they can be changed if the situation changes.


>> What about pacemakers (or similar devices)—should they be turned off? A pacemaker is a device implanted under the skin on the chest that keeps a heartbeat regular. It will not keep a dying person alive. Some people have an implantable cardioverter defibrillator (ICD) under the skin. This is a pacemaker that also shocks the heart back into regular beats when needed. The ICD should be turned off at the point when life support is no longer wanted. This can be done without surgery.


>> What if the doctor suggests a feeding tube? If a patient can’t or won’t eat or drink, even when spoon fed, the doctor might suggest a feeding tube. While recovering from an illness, a feeding tube can be helpful. But at the end of life, a feeding tube might cause more discomfort than not eating. As death approaches, loss of appetite is common. Body systems start shutting down, and fluids and food are not needed as before. Some experts believe that at this point few nutrients are absorbed from any type of nutrition, including that received through a feeding tube.

If tube feeding is going to be tried, there are two methods that can be used. In the first, a feeding tube, known as a nasogastric or NG tube, is threaded through the nose down to the stomach to give nutrition for a short time. Sometimes the tube is uncomfortable. If so, the doctor might try a smaller, child-sized tube. Someone with an NG tube might try to remove it. This usually means the person has to be restrained, which could mean binding his or her hands to the bed. If tube feeding is required for an extended time, then a gastric or G tube is put directly into the stomach through an opening made in the side or abdomen. This second method is also called a PEG tube for percutaneous endoscopic gastrostomy tube. These carry risks of infection, pneumonia, and nausea.

Some people try tube feeding for a short time to see if it makes a difference, while keeping open the option of removing the tube if there is no improvement. Talk to the doctor about how the feeding tube could help and how long it makes sense to try it.

Refusing food might be a conscious decision—a part of the dying person’s understanding that death is near. The decision-maker should think carefully about doing something that might be against the dying person’s wishes.


>> Should someone dying be sedated? Sometimes very near the end of life, the doctor might suggest sedation to manage symptoms that are not responding to treatment and still make the patient uncomfortable. This means using medicines to put the patient in a sleep-like state. Sedation doesn’t cause a person to die more quickly. Many doctors suggest continuing to use comfort care measures like pain medicine even if the dying person is sedated. Sedatives can be stopped at any time. A person who is sedated may still be able to hear what you are saying—so try to keep speaking directly to, not about, him or her. Do not say things you would not want the patient to hear.


>> What about antibiotics? Antibiotics are medicines that fight infections caused by bacteria. Lower respiratory infections, such as pneumonia, are often caused by bacteria and are common in older people who are dying. If someone is already dying when the infection began, giving antibiotics is probably not going to prevent death but might make the person feel more comfortable. Tom was eighty-three and had lived in a nursing home for several years with advanced Parkinson’s disease when he choked on some food causing him to inhale a small amount into his lungs. As a result, Tom developed aspiration pneumonia. The doctors assured his wife that they could keep Tom comfortable without antibiotics, but she wanted them to try treating his pneumonia. He died a few days later despite their efforts.


>> Is refusing treatment legal? Choosing to stop treatment that is not curing or controlling an illness or deciding not to start a new treatment is completely legal—whether the choice is made by someone who is dying or by the one making health care decisions. Some people think this is like allowing death to happen. The law does not consider refusing such treatment to be either suicide or euthanasia, sometimes called “mercy killing.”


>> What happens if the doctor and I have different opinions about care for someone who is dying? Sometimes medical staff, the patient, and family members disagree about a medical care decision. This can especially be a problem when the dying person can’t tell the doctors what kind of end-of-life care he or she wants. For example, the family might want more active treatment, like chemotherapy, than the doctors think will be helpful. If there is an advance directive (see page 58) explaining the patient’s preferences, those guidelines should determine care. Without the guidance of an advance directive, if there is disagreement about medical care, it may be necessary to get a second opinion from a different doctor or to consult the ethics committee or patient representative, also known as an ombudsman, of the hospital or facility. An arbitrator (mediator) can sometimes assist people with different views to agree on a plan. (See To Learn More below.)


>> The doctor does not seem familiar with our family’s views about dying. What should we do? America is a rich melting pot of religions, races, and cultures. Ingrained in each tradition are expectations about what should happen as a life nears its end. It is important for everyone involved in a patient’s care to understand how each family background may alter expectations, needs, and choices. You may come from a different background than the doctor you are working with. You might be used to a different approach to talking about what is happening or making health care decisions at the end of life than the medical staff is. For example, many health care providers look to a single person—the dying person or his or her chosen representative—for important health care decisions at the end of life. But, in some cultures the entire immediate family takes on that role, something American doctors might not expect. It is helpful to discuss your personal and family traditions with your doctors and nurses. Don’t be reluctant to say what you want. Each person—each family—is entitled to the end-of-life care that best matches their beliefs and rituals. Make sure you understand how the available medical options presented by the health care team fit into your family’s desires for end-of-life care.

If there are religious or cultural customs surrounding death that are important to you, tell the health care providers with whom you are working. Knowing that these practices will be honored could ease the dying person. Telling the medical staff ahead of time may also help avoid confusion and misunderstanding when death occurs.


Questions to Ask

Here are some examples of the kinds of questions you might want to ask the medical staff caring for the dying person:

1. What is the care plan?
2. If we try using the ventilator to help with breathing and decide to stop, how will that be done?
3. If we try the treatment plan you are suggesting and then decide to stop, what will happen?
4. If my family member is dying, why does he or she have to be connected to all those tubes and machines? Why do we need more tests?
5. What is the best way for our family to work with the care staff?
6. How can I make sure I get a daily update on my family member’s condition?
7. Will you call me if there is a change in his or her condition?

Things to Share

Make sure the health care team knows what is important to your family surrounding the end of life. You might say:

1. In my religion, we … (then describe your religious traditions regarding death).
2. Where we come from … (tell what customs are important to you at the time of death).
3. In our family when someone is dying, we prefer … (describe what you hope to have happen).

To Learn More

About Decisions You Might Need to Make:

* Society of Critical Care Medicine
www.sccm.org 847-827-6869

* Family Caregiver Alliance
www.caregiver.org 800-445-8106 (toll-free)

About Family Mediation:

* Association for Conflict Resolution
www.acrnet.org 202-464-9700