It’s time to talk about dying

Upon returning from the PHEWA Biennial Conference in New Orleans, I was asked to write a piece focusing on end-of-life decision making for Access Sunday. It was suggested that with my experience as a hospital chaplain for a little more than forty years, I might have something to offer by way of wisdom in these end-of-life decision making matters. As I thought about it, I recognized that with so much denial of death, and discomfort in talking about the dying process in our society, we who share in the "disability community" need to be willing to speak out loudly and clearly.

Let me first offer a disclaimer. The comments in this brief essay are my opinions and feelings only, and without any disrespect, I don't really much care whether you agree or disagree with me. Indeed, I hope very much that many of you who read this will be stirred to share openly your feelings, opinions, concerns on the issues, processes and preparations for end-of-life decision-making.

I suspect that many of us have very different thoughts and ideas around these issues; the subject is too important not to discuss a wider range of options. What is really at the heart of the matter is my conviction that, until we are faced with a crisis that is generated either by facing death ourselves or facing the death of a loved one, we spend relatively little time even talking with anyone about our feelings and opinions. Maybe the greatest gift we can give to our loved ones is the gift of sharing our personal attitudes, feelings and convictions around the dying process. We need to go back upstream significantly to engage in such conversations, at a time when we can be relatively sane about our dialogue.

Overcoming our awkwardness and discomfort in raising the subject is a primary challenge. Except for some celebrated cases, for the most part we do not talk much in the public arena or in our private homes about issues relevant to the dying process. I suspect that you have heard only occasionally a sermon about the importance of an advance directive or creative dialogue with family members around end-of-life decisions. If you have heard such a sermon, you need to commend the person who offered it with a substantial raise, or at the very least, a genuine expression of gratitude.

Not too long ago, I was asked to lead four sessions of adult education at my church around the issues of end-of-life decision-making. The attendance was relatively small compared with some of the other courses I've been asked to offer. Several persons in the class acknowledged that they did not have an advance directive. This was the more shocking to me in as much as one was our assistant pastor, who a few months earlier, had had a mild heart attack. We made a covenant together that, by the end of the class, he should have completed his advance directive form.He fulfilled the covenant, for which I am eternally grateful. I think it is important that these conversations take place in the supportive community of the church and with friends and colleagues we trust. It's not an easy conversation, but it's one in which we should all engage.

I'm sure that some of you want to remind me quickly that many in the medical profession and some other healthcare disciplines differ sharply regarding the value or quality of life when they consider approving continuing treatment for persons with severe mental and physical disabilities. The point I want to make is that I believe that the issues regarding end-of-life planning are precisely the same for persons who are able-bodied as for persons who are disabled. I fully recognize that the real world creates unreasonable barriers to our full participation. Nevertheless, starting the careful and sensitive discussion around end-of-life is difficult for all of us as are other matters that we, in the disabled community, must confront. The world in which we live and make our decisions sometimes puts up barriers that are much more difficult to cross for those of us who have disabilities than for others. But the issues are exactly the same. It's a hard decision; it's a hard conversation; it's a hard topic for us to get our minds around in order to make intelligent, creative, caring and loving decisions.

The worst thing that families can say to us in the hospital around the bedside of a loved one is “do everything to save her or him.” Most of us have no idea what “do everything” means, and if we did, we would not want it for ourselves or for our loved ones. What would be much more helpful for any of us, as we face these issues, is a more in-depth discussion of our goals and the sober appreciation of the consequences of decisions. Being clear about the quality of our dying process takes a lot more energy, care, and discussion than telling our physician to “do everything.”

Many of us, when we come close to the end of life, may be impaired significantly in our cognitive ability to make reasonable and intelligent decisions about what we wish to affirm and approve or disapprove in terms of treatment. Some in the disability community who have significant cognitive disability from birth may be deemed less than competent to make personal decisions about end-of-life issues. I recognize all of these issues, including the reality that for most people in a severe crisis, clear thinking about our wishes may be impaired.

What is needed is for us to respect, as much as we can, the supportive community that will assist us in breaking down the decision-making process into its simplest form and support us in working through that process. It's never going to be a perfect plan, and we all need a loving, caring community to surround us as we make difficult decisions. The church is such a community and should provide leadership in helping to protect, support and encourage this dialogue. It is important that we approach these issues with respect for the dignity of each individual and trust that, as the community of faith, we will make decisions that call forth and sustain God's healing presence.

Suggested resources

In my judgment, the very best advance directive form is that provided by "Five Wishes.”

In addition, most every state has an advance directive form approved by the state medical association and easily downloaded from that Web site.

Sacramento Healthcare Decisions' publication "Finding Your Way: A Guide for Medical Decisions Near the End of Life" is also useful. The publication is available in Spanish and English. You may also phone (916)851-2828.

— by the Rev. Timothy H. Little

The Rev. Timothy H. Little is a board certified chaplain and clinical pastoral education supervisor at the University of California, Davis Medical Center in Sacramento, California. Legally blind from birth, he has been totally blind for the past 12 years. He has been a leader in PHEWA and is currently the moderator of the Presbyterian Association for Specialized Pastoral Ministries (PASPM) network. He is an editor of the Journal of Religion, Disability & Health and an advocate for persons with disabilities.