If you weren’t able to attend Alive Hospice’s conference for faith leaders earlier this month, you can still benefit from what the presenters had to say! We’ve made available the text from all four presentations as a free and helpful resource. Alive Hospice Blogger and Chaplain Nanette Mathe was one of the presenters, along with Chaplain Allen Withers, Chaplain Mark Russell and Chaplain Phyllis Sublett.

Don’t miss these powerful presentations!

In the days leading up to the third annual National Healthcare Decisions Day (April 16) Alive Hospice will provide helpful information about advance care planning to help Alive Hospice Blog readers get started. If you’ve already completed your advance directives, we hope you’ll encourage others to do so and forward this information to friends and family!

Click here to forward this information to a friend!

Dr. David Tribble

As health care reform (in whatever form it will actually take) begins to develop under our eyes, there is more attention paid now to the issue of thinking about, discussing, and then making known what each of us wants for ourselves.

A prominent news anchor spoke with no degree of charity about the narrowness of mind that refers to such conversations as “death panels.” In a recent blog at The Human Condition, the blogger developed an argument familiar to those of us who are already believers, that sober consideration of these issues in advance leads to fewer painful, intrusive, expensive, and ultimately unsuccessful interventions at the end of life. A salient point in this age of health care reform is that those who had the end-of-life converstations not only had earlier hospice care, better quality of life, and fewer futile hi-tech interventions. They also survived just as long as those who did have those interventions!

Those who fail to learn from history are condemned to repeat it. It is with that thought that we remember the last months of the life and dying of Terri Schiavo, in which two sides of her family waged a bitter and nationally televised legal battle, each side certain that it knew what she would have wanted, and neither side with possession of any firm information that they did, in fact, know. Tragically, there was also no way for either side to actually find out.

While most families do not achieve the degree of press coverage that this family did, the fighting and division can be just as bitter, all for the absence of each of us making some statement to someone who matters to us what we would want in such circumstances. It doesn’t matter what you choose for yourself, even whether it is realistic or not. It matters first and foremost that you make a statement about your wishes so that others don’t have the burden of making a decision on the basis of too little information.

It is also true that once is not enough. The decisions you make for yourself when you are 25 may look very different from the ones you make when you are 55. Even a week may make a difference, if, in that week, you have experienced something that changes the way you think of everything. There is no limit to the number of times you are allowed to change your mind, tweak your decision, or reconsider the whole thing.

None of that will matter, however, if you never tell anyone.

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

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.