Tuesday, March 15, 2011

Where Atheists Go to Die: Preparing for Hospice Care as a Nontheist

As the organizer of a community group of nontheists, many of whom are older and have ongoing medical problems, I have the opportunity to hear a variety of personal stories about the experiences of nontheists in hospitals and hospice care. None of these stories is ever good. They are always stories of an atheist in a position of vulnerability being approached by a religious staff person who tries to reframe the atheist’s experience in religious language. And unfortunately, when facing a horrifying diagnosis, a dangerous surgery, or a weighty medical decision, most atheists I know just don’t have the emotional energy to protest. Everyone deserves nurture and consideration during these times—and there shouldn’t be a religious monopoly on this kind of care.

End-of-life care in particular is rarely provided in a way that would satisfy most atheists; I witness this constantly in my work with hospice. While the idea of hospice and the foundational principles of the model are indeed secular, the language hospice workers use when addressing end-of-life questions, fears and decision-making is at best couched in nondenominational but highly supernatural terms. We speak of going toward the light. Of letting go and becoming free. Of the beautiful metamorphosis that happens when we leave our earthy bodies. And most hospices do not employ a psychologist or a philosopher who can help us work through our concerns about the dying experience in a naturalist way. They employ a religious chaplain.

I am a passionate advocate for the hospice model of care; for people who are near death, the opportunity to die in your own home surrounded by the people you love is the best possible approach to facing the cruel reality of death. I don’t want to pretend that death is lovely, or that you will not suffer pain or indignity or fear. But hospice offers a way to do this together with the people who love you and who want to be with you through the very precious last moments of your life.

That said, hospice care presents unique challenges for atheists, and I want to take a moment to offer some practical suggestions to nontheists who wish to receive hospice care so that you won’t suffer the ridiculous imposition of having your last moments of experience filled with the voice of a nurse or other well-meaning worker telling you to go to the light and be with Jesus.

First and foremost, be clear with your caseworker and the hospice social worker about your naturalistic worldview. Make sure appropriate notes are marked in your chart for the nurses, aides and volunteers. Hospice workers are generally trained to be sensitive to different religions and cultures; while atheism may be completely foreign to them, their training should enable hospice staff to be sensitive to beliefs they don’t agree with. I hope one day nontheistic perspectives will be included in the training hospice workers receive (I have offered this training at the hospice for which I volunteer) but until then, we have to do a little extra work to get everyone on the same page about your needs. Be straightforward but take care to be respectful, because many theists associate atheism with arrogance, depravity, anger...well, you know. You don’t want to get into a situation where your caregivers feel hostile toward you or are afraid you’ll be antagonistic.

Secondly, in addition to comprehensive medical directives, consider filling out a Five Wishes form. You can probably get the forms free from your hospital or hospice, but you can order them here: Aging with Dignity. While the Five Wishes form is biased toward theism, it is very easy to edit it to suit your own perspective and needs. As an advanced directive, the Five Wishes form is legally binding in most states, but it differs from traditional directives in that it goes into detail about care measures beyond those that are purely medical—so for example, you can include what kind of music you find comforting, what kind of literature or poetry you might like read to you when you are no longer responsive, etc. You can specify that you don’t want people to pray aloud near you, play religious music, perform any kind of religious rites or proselytize in any way—and along with what you don’t want, you can offer meaningful alternatives. What would you like someone to tell you when you’re actively dying? Consider Ann Druyan’s account of sitting with Carl Sagan as he died in (I cry every time I think of it). Druyan writes in the afterword to Sagan's book Billions and Billions: For days and nights Sasha and I had taken turns whispering into Carl's ear. Sasha told him how much she loved him and all the ways that she would find in her life to honor him. Brave man, wonderful life,” I said to him over and over. “Well done. With pride and joy in our love, I let you go. Without fear.” This is a beautiful example of how we can use the language of life to be present with someone who is dying, and how we can offer soothing words without saccharine lies. You may want to cite examples like this one. Make sure the hospice staff reads your Five Wishes and any other directives you may have.

I encourage you to find ways to create a satisfying legacy. For example, many atheists in my local group will be donating their bodies to scientific research (myself included). You can also honor an organization that is meaningful to you in your will (my first picks would include Secular Coalition for America and the Humanist Chaplaincy at Harvard) and ask that donations be given in your memory to these organizations. Another way to attend to your legacy is to write notes to your family/friends about your hopes for them and your values; this helps the people you care about feel connected to you after you’re gone. You may find it reassuring to know that there are many very tangible ways that who you are as a human being can continue to have a meaningful impact on the world even after you can no longer participate in it.

Next, connect with your local atheist community such as a chapter of the American Humanist Association or a nontheistic Meetup. If your state or metropolitan area has a Coalition of Reason, this is a great place to find such local groups (find your area's CoR here: UnitedCoR). Local groups sometimes have lists of atheist-friendly services and might be able to help you find an atheist philosopher, psychologist, social worker, etc., who would be willing to meet with you and make sure any questions or existential crises you may have are adequately addressed.

Finally, while I am by no means an expert on death and dying, I am more than happy to help atheists in this situation track down additional resources and offer suggestions/support based on my own experiences in the hospice community. Please don’t hesitate to email me if there are ways I can help: serah(at)spectrumexperience(dot)com.

I hate that we must die. I think it is absolutely vile that the most beautiful people I know and love will cease to exist. I do not approve. And religious intrusion into this intimate dying time adds insult to injury. For those of us who care for the dying and for those who face death themselves, let’s work together to make sure that no one has to fight for a secular death.


John said...

Thank you for writing this!!!

Renee Cooperman said...

I believe I said that every atheist who is going to die needs your voice in this conversation, and that you piece was beautifully written and moving.

The Mother said...

They do, indeed, try to take over, don't they? The religious just don't understand how one can face death without belief.

charbabay19 said...

Serah, my name is Charlotte and I am currently the student intern at the Humanist Chaplaincy at Harvard. I graduate in May from Harvard Divinity School and am a Humanist committed to entering into the field of hospice chaplaincy. I have accepted a residency position at Emory Hospital in Atlanta for the next year so that I might gain the experience necessary to do the best I can at providing the type of care you speak of so eloquently here. I would love to speak with you about your fantastic blog, your experiences, and perhaps just get to know someone as similar to myself as you are!

Serah B. said...

Charlotte - I would love to speak with you more about this! Send me an email at serah(AT)secularaz(DOT)org and let me know how I can contact you. I'm actually going to be in Boston this week for the AHA conference--perhaps we could get together for drinks! I look forward to connecting with you. Serah

Anne said...

I add my voice to the chorus of the grateful. As a hospice volunteer, I am always amazed at how little understanding there is truly for people who are non-theistic. It seems to me that many wait for the much hoped for last breath confession or think the poor soul is just too far gone to realize what he/she is missing. It would be wonderful to help hospices develop support for those facing death which are not laden with theistic undertones (or overtones, for that matter) for those who do not wish it. Thank you for the post. I hope those who have commented will consider joining together to further this aspect of walking with the dying.

Serah B. said...

Anne - Thank you for your comment. You will be pleased to know that in fact we *are* beginning to band together to create more resources for dying nontheists. I was able to meet Charlotte in Boston and am very excited about some of the work she's doing, her thesis and her plans after grad school. We're hoping to undertake a project in the near future to address the needs of nontheists as they approach death. We also met some chaplains from Ethical Culture who have created their own curriculum to train chaplains. And I met a secular humanistic Rabbi who has been sharing resources with me as well...so I think we're poised to begin correcting this problem, and I will continue to write about it on my blog. In the meantime, if you've had any experiences as a hospice volunteer that you feel would be helpful for us to know about as we work toward creating a body of literature that addresses secular approaches to death and the needs of nontheists, please don't hesitate to email me: serah(AT)secularaz(DOT)org.

Jeff Perrin said...

Serah I'm in CA and really hope I can find someone like you when it's time for me to go into hospice. Losing the ability to control my surroundings is something I'm currently stressing about. I don't want my estranged evangelical sister coming in to hover over me praying when I don't have the strength to tell her to leave, and I also don't want some evangelical staff member of the facility doing the same. I understand their desire as evangelicals to do so but it really bothers me, especially since they are the group that prolonged the scientific studies here in the US that I believe will eventually save lives like mine in the not too distant future. I'm so stressed about losing the ability to control my environment that I'm already looking into facilities out of state, particularly OR, where I believe assisted suicide is also a legal option. If I had time I would start a hospice facility that focuses on the patient's environment foremost. In my case I want to smell the ocean and listen to the music I want to hear without any artificial fragrance (perfume etc) invading my space. I don't want a nurse or relative worming their way into my room to "save my soul" when I'm at my most vulnerable.
Keep up the good work Serah! finding your blog today has given me more hope.

Alejandro Grover said...

Seriously glad you stepped up and wrote this. good to hear.

Mary Bakke said...

Thank you so much for writing this. My husband and I are in our 70's and we have been looking since our 50's for some information and struggling to find a life care facility for our last years. We will research some of your suggestions and PLEASE if you can continue your valuable service to those who do not want religion to intrude on our last days of life.