It's important for everyone to execute advance directives. These include a living will, which documents a person's desires related to end-of-life medical decisions, and a durable power of attorney, in which someone is appointed to make healthcare decisions if the person is no longer able to do so, due to either a physical condition or reduced mental capacity.
It's especially important for people with Alzheimer's to have these documents prepared if they don't already have them. This should be done early in the course of the illness, when a person is still mentally competent to make such decisions.
When people with Alzheimer's have not executed advance directives and are unable to make end-of-life healthcare decisions on their own, the caregiver will need to make the decisions for them. These include several different issues over time, such as the use of CPR, antibiotics, hospitalization, a ventilator or feeding tube and, ultimately, engaging hospice care services.
As described in Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, my soul mate, Ed, did not have advance directives in place, and so I had to make all of the decisions regarding his end-of-life care. I knew nothing about it at the time, and thus did a lot of research and talked to several healthcare providers before making the decisions. Here's what I found out:
CPR: Doing CPR on an elderly, debilitated Alzheimer's patient may do more harm than good. Risks include broken ribs, collapsed lungs, brain damage and permanent need for a ventilator. "The chance that it would even work for such a patient is extremely low. The chance that it would return the patient to his or her former quality of life is practically nil," Doug Smucker, MD, a professor of family medicine at the University of Cincinnati Health Sciences Center, told me. If the caregiver decides against CPR, it's necessary to ask the patient's physician to put a DNR (Do Not Resuscitate) order in the chart.
Antibiotics, Hospitalization, Ventilator: It's probably best to make decisions about these issues at the time of need rather than in advance. The decisions should take into account the patient's general condition at the time. Is the patient alert and responsive? Is he or she in pain? What is the person's quality of life? Is the patient likely to recover from whatever is causing the need for the antibiotic, hospitalization or ventilator? For example, if a frail patient has pneumonia, you can try antibiotics and a ventilator if needed, but if the person's condition continues to worsen, you can then withdraw the medication and ventilator and allow the person to die in peace.
Nasogastric Tube Feeding: "During the natural process of dying, the body is shutting down and no longer wants food," says Darby Morhardt, a social worker at Northwestern University Alzheimer's Disease Center. The use of nasogastric tube has potential negative side effects, including pain and infections.
Percutaneous Endoscopic Gastronomy (PEG) Feeding: Using PEG feeding (feeding through a tube inserted into the stomach or small intestine) "can result in back-up to the esophagus, increasing the risk of aspiration pneumonia," states Dr. Steven Post, a professor of bio-ethics at Case Western University School of Medicine. He adds that it also prevents the patient from walking, and can result in weeks of unnecessary suffering. On the other hand, he points out that "cessation of food intake results in the release of endorphins, which reduce pain."
Hospice: Hospice care focuses on providing comfort at the end of life rather than using heroic means to prolong it. If caregivers start hospice services, then change their minds, they can sign their loved one off (or back on) hospice care at any time. However, the Alzheimer's Association Ethics Advisory Committee has concluded that "all efforts at life extension in the advanced stage of Alzheimer's create avoidable suffering for patients who could otherwise live out the remainder of their lives in greater comfort and peace."
Symptoms that Qualify the Patient for Hospice Care: Gregg Warshaw, MD, Director of Geriatric Medicine at the University of Cincinnati and former president of the American Geriatric Society, told me it may be time to consider using a hospice service if the patient is showing any of the following signs:
- Two or more episodes of pneumonia or other serious infections within a 6-month time frame.
- Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10% or more over the preceding 6 months.
- One or more skin pressure ulcers that are not healing.
The Most Important Decision: All of the above decisions are very difficult and can be agonizing to the person who has to make them on someone else's behalf. But the most important decision is to stop focusing on the loved one's approaching death and start figuring out everything that can be done to help the patient have the highest possible quality of life in the time that's left. This dynamic shift in thinking will benefit both the patient and the caregiver.