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.
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.
Determine the best course to take
One approach 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. Some experts believe that decisions should be based on substituted judgment whenever possible, but decision-makers sometimes combine that with another method.
Another approach, known as best interests, is to decide what would be best for the dying person.
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?
Make sure every decision is clear
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.
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 to give you a general understanding and 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 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.
- 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.
Because of advances in medicine, each of us, as well as our families and friends, may face many decisions about the dying process. As hard as it might be to face the idea of your own death, you might take time to consider how your individual values relate to your idea of a good death. By deciding what end-of-life care best suits your needs when you are healthy, you can help those close to you make the right choices when the time comes. This not only respects your values, but also allows those closest to you the comfort of feeling as though they can be helpful.
There are several ways to make sure others know the kind of care you want when dying.
Talking about end-of-life wishes
The simplest, but not always the easiest, way is to talk about end-of-life care before an illness. Discussing your thoughts, values, and desires will help people who are close to you to know what end-of-life care you want. For example, you could discuss how you feel about using life-prolonging measures or where you would like to be cared for. For some people, it makes sense to bring this up at a small family gathering. Others may find that telling their family they have made a will (or updated an existing one) provides an opportunity to bring up this subject with other family members. Doctors should be told about these wishes as well. As hard as it might be to talk about your end-of-life wishes, knowing your preferences ahead of time can make decision making easier for your family. You may also have some comfort knowing that your family can choose what you want.
On the other hand, if your parents are aging and you are concerned about what they want, you might introduce the subject. You can try to explain that having this conversation will help you care for them and do what they want. You might start by talking about what you think their values are, instead of talking about specific treatments. Try saying something like, “when Uncle Walt had a stroke and died, I thought you seemed upset that his kids wanted to put him on a respirator.” Or, “I’ve always wondered why Grandpa didn’t die at home. Do you know?” Encourage your parents to share the type of care they would choose to have at the end of life, rather than what they don’t want. There is no right or wrong plan, only what they would like. If they are reluctant to have this conversation, don’t force it, but try to bring it up again at a later time.
Advance directives and other documents
Written instructions letting others know the type of care you want if you are seriously ill or dying are called advance directives. These include a living will and health care power of attorney. A living will records your end-of-life care wishes in case you are no longer able to speak for yourself. You might want to talk with your doctor or other health care provider before preparing a living will. That way you will have a better understanding of what types of decisions might need to be made. Make sure your doctor and family have seen your living will and understand your instructions.
Because a living will cannot give guidance for every possible situation, you probably want to name someone to make care decisions for you if you are unable to do so for yourself. You might choose a family member, friend, lawyer, or someone in your religious community. You can do this either in the advance directives or through a durable power of attorney for health care that names a health care proxy, who is also called a representative, surrogate, agent, or attorney-in-fact. “Durable” means it remains in effect even if you are unable to make decisions. A durable power of attorney for health care is useful if you don’t want to be specific—if you would rather let the health care proxy evaluate each situation or treatment option independently. A durable power of attorney for health care is also important if your health care proxy, the person you want to make choices for you, is not a legal member of your family. Of course, you should make sure the person and alternate(s) you have named understand your views about end-of-life care. If you don’t name someone, the state you live in probably has an order of priority based on family relationships to determine who decides for you. A few states let people name a health care proxy by telling their doctor, without paperwork.
Don’t confuse a durable power of attorney for health care with a durable power of attorney. The first is limited to decisions related to health care, while the latter covers decisions regarding property or financial matters.
A lawyer can prepare these papers, or you can do them yourself. Forms are available from your local or State government, from private groups, or on the Internet. Often these forms need to be witnessed. That means that people who are not related to you watch as you sign and date the paperwork and then sign and date it themselves as proof that the signature is indeed yours. Make sure you give copies to your primary doctor and your health care proxy. Have copies in your files as well. Hospitals might ask for a copy when you are admitted, even if you are not seriously ill.
Sometimes people change their mind as they get older or after they become ill. Review the decisions in your advance directives from time to time and make changes if your views or your health needs have changed. Be sure to discuss these changes with your health care proxy and your doctor. Replace all copies of the older version with the updated ones, witnessed and signed if appropriate.
You should also give permission to your doctors and insurance companies to share your personal information with your health care proxy. This lets that person discuss your case with your doctor and handle insurance issues that may come up.
Do you live in one state, but spend a lot of time in another? Maybe you live in the north and spend winter months in a southern state. Or possibly your children and grandchildren live in a different state and you visit them often. Because states’ rules and regulations may differ, make sure your forms are legal in both your home state and the state you travel to often. If not, make an advanced directive with copies for that state also. And make sure your family there has a copy.
Based on content from the National Institute on Aging booklet “End of Life: Helping with Comfort and Care.”