The End of the Journey May 2005
The End of the Journey May 2005
As I sit to write this month, the news is filled with the deaths of Terri Schiavo and Pope John Paul. These very public events brought the subject of death into print and conversations, something otherwise quite rare.
I want to encourage you to take this opening and push it a bit further. Talk with your loved ones about death. This is probably the hardest conversation to have. Research shows that Americans are more likely to talk to their children about safe sex and drugs than end-of-life issues. It is as if we believe that not talking about it will keep it from happening—but it will, to all of us. We plan for weddings, for college, for retirement, but we can’t bring ourselves to talk about how we want to be cared for at the end of life.
Does your family know what you want? Terri Schiavo was not able to tell her family after she lost consciousness. Pope John Paul is said to have been conscious and involved in the decisions made in his final days. The time to talk is NOW. Use the news or events happening to people you know to open the subject and stick with it through the discomfort. Share your values, ethics and preferences. Do not leave it to your family to guess when they are scared, grieving, and trying to advocate for you with the health care system. Do not create a situation where this becomes a painfully divisive issue between family members.
The reality is that death is often not a single either/or question such as “do we remove a feeding tube”, but a series of incremental questions about antibiotics, IV fluids, medications and interventions. Families have to weigh questions of whether continuing care causes suffering, whether they are giving up too soon, how hard to pursue other options. A living will (or “Will to Live”, as some are writing) can guide your family, but can’t anticipate every question they will face. The more detail you provide, the more helpful a guide it can be.
These issues get more complex every year. As medical technology improves, the decisions get more complex. There is also more likelihood of staying alive after a major health event such as a stroke or heart attack. It is likely that you will need more care, at greater expense to your family, or to Medicaid, which all Americans pay for. Long term care insurance can address some of these costs for some period of time, but many people do not have it, can not afford it, or do not qualify for it. Families will not be able to avoid the financial implications of their decisions.
If you wrote an advance directive several years ago, it would be a good idea to review it and to complete a new one. The forms were changed after the HIPPA law was passed, and also reflect the growing complexity of end-of-life decisions.
So, please, have these conversations now. Write an Advance Directive and appoint a Power of Attorney. Give a copy to your doctors and your family. You can also post it at a national website. For more information go to, abanet.org/aging/toolkit, myhealthdirective.com, caringinfo.org and uslivingwillregistry.com. If you want to know more about the Will to Live, go to the National Right to Life Committee at nrlc.org. If you want a referral to an elderlaw attorney, call PSRC or go to naela.org.
Susan W. Hoskins LCSW
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