A quick round-up of recent hospice care and grief-related items in the news:

>> A Florida teen makes a difference as a hospice volunteer. (From the Dayonta Beach News-Journal)

>> A group of college students got an close-up look at hospice care in Ontario, Canada. (From The Brantford Expositor)

>> Grief in the 21st century: Using Facebook when facing loss. (From The Sacramento Bee)

>> A family emergency prompts a California columnist to consider her own wishes for care at the end of life. (From The Bakersfield Californian)

>> A West Virginia grief counselor shares insights on men and grief. (From The Martinsburg, WV Journal)

Dr. David Tribble

An interesting and pertinent topic has gained media attention of late: the way physicians and other health care professionals are talking with patients and families about the end of life. USA Today and, more recently, Fort Wayne, Indiana’s The News-Sentinel have each carried articles about a change in that conversation: the implementation of the term “Allow Natural Death” in place of “Do Not Resuscitate.”

Many of the barriers we encounter in hospice work have to do with the language we use: whether a patient is hospice appropriate (as if anything else is somehow inappropriate), treatments described as too aggressive (as if we in hospice possess the sole power of divination between what is aggressive and what is not), and a long list of things we don’t do, such as Do Not Resuscitate, Do Not Intubate, No Artificial Nutrition or Hydration. It is precisely this emphasis on what should not be done that causes patients and physicians to see hospice care as taking options away from them, even abandoning them. The uniquely American denial of death notwithstanding, all of us will die, and part of the art of palliative medicine is the determination of that point where further attempts at prolonging life are both futile and more burdensome than beneficial. At that point, it is not about what we don’t do, it is about what we do offer:

• We ease pain and difficulty breathing without having to put a tube into the windpipe and tie all four extremities to the bed to keep the patient from pulling it out.
• We manage chronic disease states to maximize patient comfort, and, in so doing, we actually offer them their best survival.
• When death is the inevitable outcome, we do not hasten it, but we recognize the futility of standing in its way, and so we allow it with only enough intervention to maintain the comfort and dignity of the patient.

And so our language needs to change to reflect what we really do. We do our best to identify when a patient is right, or eligible for hospice services, not by some arcane standard of appropriateness, but on careful assessment of the inevitability of his or her death with or without life-sustaining treatment. We measure treatments and interventions, not on some privately held scale of aggressiveness, but with an honest appraisal of the benefit vs. the burden. And, when the benefits are few and the burdens are many, we allow natural death. Our understanding is that the outcome will be the same whether we apply all of technology and struggle with death or allow it to occur as a natural part of living, with dignity and peace.

So, the change from DNR (Do Not Resuscitate) to AND (Allow Natural Death) is more than an exercise in semantics. It is a recognition that we are not denying the patient anything, rather providing the patient something that the other approach does not.

Dr. David Tribble is Alive Hospice’s chief medical officer.

Becky Riney

Advance directives are usually only done in a crisis, but you don’t have to wait until one happens. An advance directive is a legal document giving advance instructions on what type of medical treatment you want or do not want in certain situations, or whom you want to designate to make medical decisions for you when you are unable to speak for yourself. The time to make these documents is BEFORE you need them.

Many times I have worked with families who wish they had been done sooner, because they waited too long and the patient was no longer able to execute a living will or power of attorney for health care. Many times I have worked with families who wish they knew more about the patient’s wishes so they didn’t feel the burden of making decisions themselves rather than following the patient’s wishes.

Many people say they do not want to be “kept alive on machines,” but want to be allowed to die naturally if they have a condition from which they will not improve. A living will (not to be confused with a will that designates what happens to your estate) or advance care plan is a way to express those wishes.

A power of attorney for health care (also known as appointment of health care agent) designates whom you want to make decisions for you if you are no longer able to speak for yourself. It is important to let this person know your wishes as much as possible and to have copies of this document easily available. An advance care plan can include the living will and appointment of health care agent information in the same form.

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Dr. David Tribble

In an article in the March 9th issue of the Archives of Internal Medicine, a study was published which showed that patients who had end-of-life discussions with their physicians experienced better quality of life and death, lower medical costs, and less use of invasive treatments. Those who did not have the conversation were more likely to have invasive (and expensive) interventions right up to the time of death, had much higher health care costs, had more uncomfortable deaths, and didn’t live any longer than those who had such conversations and opted a more palliative approach.

One of the study’s authors looked at the potential savings and called the end-of-life discussion “the multi-million-dollar conversation.”

This study quantifies an issue that has been avoided largely: that Americans spend more time and money on high-tech end-of-life heroics than the rest of the world combined, and do not live any longer for it. Hospice care is not anti-technology, anti-survival, or anti-hope.  It is a call for us to look seriously at what works. The fact that we have a technology does not make it effective for all people, and we actually have very good data regarding where such technology can be effective, and where it is unlikely to be effective. It is time we looked seriously at our own data and stopped performing treatments that we know are ineffective.

The motive for applying uncomfortable, expensive, high-tech treatments should be more sound than the simple inability to tolerate the absence of intervention. The end-of-life conversation is an opportunity to invite the patient to live what remains of his life on his own terms, to gain an honest grasp of what medical technology does and does not have to offer from this point onward, and to achieve a death that is comfortable and dignified — all at no cost in terms of survival.

Dr. David Tribble is Alive Hospice’s chief medical officer.

It’s April 1, which means that the second annual National Healthcare Decisions Day isn’t far off! You’ll be hearing more about advance care planning on the Alive Hospice Blog as April 16 draws near. It never hurts to start thinking about your wishes regarding treatment options in advance of an illness.

An interesting statistic: According to a 2006 Pew Research Center study, though 95 percent of Americans surveyed said they had heard of a living will, only 29% had completed one. Have you?

Stay tuned for more information about advance directives and National Healthcare Decisions Day!