Will Hospice Shorten Your Life?

images-1Many of us might believe that when we choose to accept hospice care at the end of our lives, our lives will be shortened as a result. After all, hospice patients often stop painful chemotherapy or other interventions that are expected to prolong their lives.

But a number of studies have proven this not to be true. A landmark study from the Massachusetts General Hospital in 2010 made some startling findings. Researchers randomly assigned 151 patients with Stage IV lung cancer to two possible approaches to treatment. Half received the usual oncological care. The other half received the same oncological care with additional visits from a palliative care specialist. These specialists focus on preventing and relieving the suffering of patients.

Those who saw a palliative care specialist chose to stop chemotherapy sooner, entered hospice far earlier and experienced much less suffering at the end of their lives. And they lived 25% longer that those who did not receive palliative care!

Atul Gawande, M.D. ,in his groundbreaking book, “Being Mortal”, states that “Like many other people, I had believed that hospice care hastens death, because patients forego hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies show otherwise.”

He adds, “For some conditions, hospice care seemed to extend survival. Those with pancreatic cancer gained an average of three weeks, those with lung cancer six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer when you stop trying to live longer.”

Gawande, a practicing physican in Boston, reports that most terminally ill cancer patients have had no discussion with their doctors about their goals for end of life care despite being within months of death. But those patients who enrolled in hospice, suffered less and were better able to interact with others forlonger period of time. “People who had substantive discussions with their doctor about their end of life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”

Time to talk Turkey

Many families gather together during the holiday season. This is the perfect time to have a meaningful conversation with your elderly parents. But many of us have difficulty opening up a serious conversation with them. Let me give you some suggestions that will help to get the ball rolling.

The experts have told us that there are two things that dominate the thoughts of our elder parents. The first is the desire to maintain control over their lives, to be able to stay in their home, to continue to drive, to do what they want to do when they want to do it. But as their health deteriorates this is often hard to do. That’s when the second most important thought takes over.  “What will be my legacy? How will my family remember me?”

2600 families with elderly parents were interviewed by the Allianz Insurance Company. 70% of them responded that discussing how the parents would want to be remembered by their children was a conversation important to them. But when polled, only 30% of the families had made the effort to do so.

When was the last time that you asked your parents, “How do you want to be remembered by your grandchildren and great grandchildren? If you are willing to ask that question, close your mouth and just listen. And remember to listen carefully. Drop all your preconceptions of what they will say and how they will say it. Listen with an open heart.

But if you are not willing to open with that question, I suggest you start with a question that everyone is willing to answer, “How did the two of you meet?” That one was a shocker for me. When my mom was moving into assisted living I reviewed with her the important documents  that she held in a metal box. Amongst her legal papers, was an envelope marked “ Letter from Bob while overseas” This was a seven page poem that my father had written on his way across the Atlantic to fight at Normandy in the D-Day invasion. It was in perfect condition. It described how my parents met and their courtship and marriage. I was surprised to learn that my mother, at age 15, ( in 1930) had called my dad to take her to a party after they had met skating that afternoon. (She still denies it to this day).

Once the conversation starts to flow, it’s important discus other areas. Things such as, “ Have you thought about what you want to do if one of you becomes sick? Do you want to stay in the house? Who do you want to take care of you? You might mention what happened in other families when these issues were not discussed. The crisis and confusion that followed.

I’d suggest that you then share with them, a very valuable three page form, “Five Wishes”, a well organized and sensitive questionnaire that gives them the opportunity to write down their health care preferences in many different situations. It can be found at www.agingwithdignity.org. Don’t try to have them fill it out then. Leave it with them and check in with them at another time to discuss their answers. You can also read my book, “Can We Talk?” where I have a created a series of more that 20 forms to gather important information from your parents. You can find it at www.parentcareplanning.com

Aging With Dignity

Have your parents told you want kind of care they want at the end of life? What if they can’t communicate with you when the time comes? They need to have a document called a Living will to make their wishes known. This document is also called an advance directive.
Doctors and lawyers have been urging Americans to fill out advance directives for decades! Yet, according to the Wall Street Journal, less than a third of American adults and less than half of nursing home patients have done so. Many people don’t want to face the fact they they may become sick and not able to communicate with their family how they want to be taken care of.

Your parent might say “If I get to that point I don’t care what happens to me.” You might respond,”Maybe you don’t care, but we do!” Without specific instructions, family members may have to decide whether your parents want to be kept alive artificially, what level of disability they are willing to live with and how to let them die if they had no hope of recovery.

If family members aren’t available, Doctors generally can make the decision whether or not to discontinue medical care if future steps are futile. But many refuse to do that, largely for legal reasons. Without other instructions, in most cases, Doctors will attempt to keep a person alive at all costs.

But studies have shown, most people would not want life sustaining care if they were in an irreversible coma. On the other hand, some patients  might want to be kept alive at all costs and some religions require it.

Advance Directives are not just about ending life, however. Aging With Dignity ( www.agingwithdignity.org) is a not for profit organization that has developed a form which covers five different important areas that should be addressed. These include:

The person I want to make health care decisions for me when I can’t make them myself. (health care proxy)
My wish for the kind of medical treatment I want or don’t want.
My wish for how comfortable I want to be.
My wish for how I want people to treat me.
My wish for what I want my loved ones to know.

This form is legal in 40 states. It is not only a Living Will but It also identifies a health care proxy, an equally important advance directive. The health care proxy is a person who is responsible to carry out you wishes and make medical decisions for you if you cannot. This person must be at least 18 years of age and should not be your health care provider or an employee of your health care provider.

You can receive the Five Wishes Form through the Aging With Dignity Website ( www.agingwithdignity.org) or call them at 1-888-594-7437.

Caring Connections, a program offered by the National Hospice and Palliative Care Organization will provide you with directions on the process of end of life planning. It specifically focuses on the naming of a health care proxy to act in your behalf. You can download the forms to name your health care proxy specifically approved in your state at: www.caringinfo.org

Advance directives do not have to be filed officially. They go into effect automatically as soon as they are signed and witnessed; some states may also require notarization. It’s important to give your family members and doctors copies, or at least instructions on how to access them. Some states have electronic registries that store advance directives online. Google Health has started a similar free online service. See www.google.com/intl/en/health/advance-directive.html

And by the way if you haven’t already figured it out, advance directives are not just for your elderly parents. You need to complete them as well! Because in reality, its not just old people who get sick or have accidents.