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Guide Life-Support Options for People With Serious Illness

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Kinds of Life-Support Decisions Family Conflict and Dementia About Dying With Dementia For More Information

Case Description

"We don't know exactly how long she is actually going to survive. Are we betting on how many days, how many months, how many weeks?" --Sherley Laureville

Marthe Laureville has been intubated for two weeks, having aspirated on her own secretions. The doctors are about to remove her from the ventilator and cannot say for certain whether she will be able to breathe on her own or whether she will require a tracheotomy and permanent life support. Her daughters are in conflict over the decision as to whether they should move forward with the tracheotomy or allow her to die. Watch the video and explore the difficult choices surrounding life-support decisions.

Deciding on whether to start or stop life-sustaining measures like nutrition and hydration -- such as feeding tubes, IV fluids and ventilators -- can be an especially troubling decision for families to make. Some people view being hooked up to life-support equipment as an untenable way to live; others choose to continue such treatment, perhaps because of deeply held religious beliefs or other moral values. In either case, the decisions have a direct bearing on the patient's quality of life. Very sick people on ventilators, for instance, cannot talk or eat. And getting nourishment from feeding tubes and IVs is not the same as having a bite to eat or taking a sip of water. Opting for artificial life support may come with unintended consequences and may lead to preventable suffering near the end of life.

 

Kinds of Life-Support Decisions

 

Ventilators

You may have to consider whether to use a breathing tube or ventilator. Ventilators can save lives by helping people who cannot breathe on their own. But a ventilator will not stop the dying process, and with it may come the need for additional medical treatments, including additional sedation, blood tests and X-rays. In addition, most people find it is much more difficult -- emotionally and psychologically -- to stop ventilation after it has already been started.

When you have come to the final stages of life, you may decide that a ventilator is not the best option. You need to know:

  • Can the doctor keep you comfortable as it is removed?
  • Does the doctor know how to use sedatives so that you don't feel short of breath?
  • Once it has been removed, will you be moved to a private room with your family?

 

Nutrition and Hydration

Deciding to stop or start nutrition and hydration -- feeding tubes and IV fluids -- can be an especially troubling decision. Nourishing another person seems like the most basic and humane option. But when someone has come to the very end of life, providing artificial nutrition and hydration may no longer serve a useful function; and in some cases, it may prolong suffering. Opting not to use feeding tubes and IVs at the end of life can also have real benefits for quality of life: It can be easier to breathe, for example, and carries less risk of skin breakdown and bedsores. Medical research and clinical experience indicate that dying people are often more comfortable without artificial hydration, and there is no evidence that not using a feeding tube or IV will lead to more suffering near dying.

 

"Do Not Resuscitate" (DNR) Order

You will also have to decide whether you want to be resuscitated if your heart stops, a procedure called cardiopulmonary resuscitation, or CPR. Patients facing the end of life will be asked whether they want to have a "Do Not Resuscitate" or DNR order. While a normally healthy person would want CPR, it may not be what a dying person wants.

  • CPR can be a brutal process, one that can disrupt what might otherwise be a peaceful and natural death. For very sick patients, CPR usually does not work, even to restore heartbeat. Those who do survive might be left to live with permanent brain injury and very uncomfortable chest injuries.
  • If you decide to have a DNR order, you need to be very clear with your family and doctors that this is your decision and you do not want CPR attempted.
  • If you are in the hospital, the order will be placed in your medical record; the hospital is likely to have some way to identify you as having a DNR order. At home, you may want to get a DNR bracelet and be sure that your family knows that you do not want them to call 911.

Making the decision that you want a DNR order is not simple, and it often causes much anxiety for patients and families. It is a sign that your illness is quite severe, and often a sort of acknowledgement that you are not going to survive it. As difficult as this decision is, it is a very important one that will help you get the kind of care you want.

 

Family Conflict and Dementia

When a loved one is dying from Alzheimer's disease or other dementias, families and health care professionals must address very difficult and complex issues and questions. In the course of making decisions about what to do and what treatments to pursue, relatives often confront cultural and social issues about what it means to be a "good" and "loving" family member. They often feel that their decisions run counter to what seems most virtuous, but that they have no alternatives, or at least none that are appealing. While families can choose technologies that prolong life, those choices often come at the cost of a loved one's quality of life, and come with real financial, physical and emotional costs to both the patient and the family.

We want to treat the patient with respect, dignity and comfort, and to provide the most basic elements of good care -- safety, warmth, shelter, food, comfort -- in whatever ways are possible given what the disease brings at the end. Like the Laurevilles, many families find that they cannot agree on what to do -- either among themselves or with the clinical team. Dr. Lachlan Forrow, director of ethics programs for Beth Israel Deaconess Medical Center, advises all involved to focus on what is truly best for the patient and on what he or she would want. "Given her life situation, what goals are important to her, or would be important to her if she had a voice in her care?" Dr. Forrow says. "Among those goals and values, which are medically achievable? And what's the best medical way to achieve those?" While it is the doctor's role to decide what is medically achievable, the family must also decide on a treatment plan that they -- and their loved one -- can live with. If the family and clinician are unable to reach agreement, they can call on the hospital to provide resources to help them do so. Such resources might range from a well-established ethics program to consultations with skilled and knowledgeable social workers, nurses or pastoral care counselors. Dr. Forrow says that "patients and families ought to feel in these conflicts that they have an advocate." And it is the responsibility of the hospital to make sure such support is available to patients and families. The real work for families, Dr. Forrow says, is working through a situation they've never been in before, trying all the while to maintain and respect the voice and wishes of the loved one.

If your family is experiencing conflict about what to do, it might help to ask the doctor to arrange for a family meeting with a social worker or palliative care team who can help mediate your differences. If nothing else, try to be aware that no matter what differences you have now, you will have to live on as a family after your loved one dies, and you may yet have to come together over other decisions about survivors, estates, funeral planning and so on. Trying to stay together as a family can be an important source of healing.

 

What to Know About Dying With Dementia

People with dementia and Alzheimer's disease typically die from complications that are somewhat treatable -- e.g., pneumonia or other infections -- and families struggle to weigh the pros and cons of treatments. The patient's life may be extended, but the satisfactions in that life might be terribly compromised. Like the Laurevilles, many families try to reconcile their memories of a once-vibrant and vital human being with the realities of someone living with what is ultimately a fatal illness, one that robs people of their most basic cognitive and physical abilities.

In the final stages of dementia, people lose their ability to control most bodily functions, and they often forget how to swallow and have no interest in eating or drinking. The decision of whether to insert a feeding tube can be very difficult for families to make, because nourishing one another is such an essential part of being human. In these situations, families should be aware that:

  • By this stage of the disease, patients are completely dependent on others for their care.
  • Using a feeding tube will not slow the progression of the disease, and it is equally likely to prolong or to hasten the dying process. In other words, artificial feeding does not, on average, alter the time of death.
  • You can offer small bites of soft food or spoonfuls of water and ice chips if you think it makes your loved one more comfortable.
  • Not starting feeding-tube treatment, or ending that treatment, may make you feel like you are withholding life-extending measures from a loved one. Sometimes, though, it feels more like a way to keep machinery from tormenting your loved one. For a person living with a long-term, progressive disease like dementia, both perspectives can be true, and it also is true that you are simply allowing the disease to take its natural course.
  • It can be hard to know whether or not your loved one is in pain. Let the care team know about your concerns, and insist that they be addressed.
  • Look for subtle changes in behavior or sleep patterns and physical signs, such as bedsores, swelling and fever. Be sure the care team is aware of these issues and that they are treated.

Downloadable Resource: What to Know About Dying With Dementia (PDF)

Decisions about whether to continue or withdraw treatment can be difficult for patients and families to make. But there are other treatment options that may benefit us as we experience dying.

 

For More Information

 

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posted november 10, 2010

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