When we are in throes of a family emergency, it might be difficult to focus on choices about death and dying. Then again, most people don’t really want to spend the time learning about their choices when things are fine, because thinking about the inevitable is uncomfortable. All the more reason to know where to find the information when you need it.
I recently stopped by to talk to Karin Kugel, the program manager of FirstStopMV. You may have heard about this excellent new Island resource in the fall — a website (firststopmv.org) that features information for all Island seniors, all in one place, administered by Healthy Aging Martha’s Vineyard (formerly the Healthy Aging Task Force, or HATF), and which adds resources from Islanders as they become aware of them. “End of Life Care” can be found at firststopmv.org/provider-category/end-of-life-care.
Valerie Sonnenthal: So, what is End of Life Care?
Karin Kugel: End of Life Care includes care-planning directives: You can complete the forms for health-care proxy in Massachusetts and the Massachusetts Medical Order for Life Sustaining Treatment; there is also information on the hospices which are the Hospice of Martha’s Vineyard or Hope Health, and home-care services.
VS: And information about what is legal as far as funerals go can be found on your website? Often people do not have a clue what freedom or rights they have when it comes to death.
KK: Yes. In Massachusetts, home burial is legal. A good resource is the Funeral Consumers Alliance of Eastern Massachusetts, the local branch of the national organization Funeral Consumers Alliance. They have good information on home burial, cremation, green burials, and all different consumer choices.
VS: So you can find the breadth of information that will inform you, rather than having to go straight to the funeral home to understand what your options are. Death and dying were a much greater part of the life cycle before they became a business only to be handled outside the home.
KK: Exactly.
VS: You’ve said that if anyone has information they are not finding on the site, to please share that information with you, so you can continue building a base of information. For instance, what might people do about a death at sea? I would think there would be people here interested in that.
KK: That’s probably covered by the Funeral Consumers Alliance, but perhaps there is an organization focused on just that; I can look into it and add it.
VS: One conversation you and I had was about finding someone who can be an end-of-life advocate for someone who is dying and has no immediate family, but wants someone to enact their wishes. Is there information on the website on how to find someone like that? Is that a doula, or who is that, and how do you find them?
KK: We added information about End of Life Doulas that was not there last week. Doulas are a developing field since the late ’90s in the U.S. Also known as death midwifes, or end-of-life coaches, or end-of-life practitioners, doulas meet with someone while they are still healthy and talk about them and their planning, and then come back and meet again. Someone may start when they are diagnosed with a terminal illness, or a family might just bring someone in to help with a home funeral or funerals in general and after-life issues.
VS: Clearly we have many religious leaders on the Island available to our community, whether one is a congregant or not; their doors are always open.
KK: Absolutely. In the Jewish faith there are chevra kaddisha, volunteers who come and wash the body ritually, prepare the funeral shroud. They are a group of volunteers at a synagogue, or there can also be a separate society. Lori Schaller, a recently ordained rabbi on the Island involved with Hebrew Center, told me about starting a chevra kaddisha at the Hebrew Center so there would be a group here.
VS: And then there’s hospice.
KK: Yes, we have wonderful hospice on the Island: Hospice of Martha’s Vineyard, which is completely free, and then there’s also Hope Health, which goes through insurance — those are the two main providers. They have similar services but different models, and I have heard wonderful things about them both.
VS: There’s the chorus who sing to the dying on the Island. Talking about death is so important …
KK: There are two resources I found just yesterday. One is called the Conversation Project, which offers a starter kit to discuss death and dying; they’re based in Watertown, and I’ve added them to the website. There is also Death Cafe, something I’ll be adding to the website; they are at DeathCafe.com, with information on how to start your own group (with tea and cookies) to have conversations about death, dying, end-of-life decisions, and choices.
VS: Is there a listing for available spaces for memorial services on the Island on your site?
KK: That’s a good idea.
VS: Besides clergy, is there someone who could lead a funeral or memorial service?
KK: Some of the death doulas do this, and there are some people who specialize. There’s the Home Funeral Alliance, which I’ll be adding. Some hospitals and hospice programs now have death doulas. Part of FirstStop is for organizations to see where there are gaps on the Island, and when they clarify a need, local organizations will also work to add services.
VS: “Green” burial information is on the site. Is there an area connected to death, dying, end-of-life rights, that you in your outreach would like to get more information about?
KK: I would say, whatever people are interested in and can’t find on our site would be great to let us know, so we can explore it and find resources.
VS: I know you’ve been doing presentations at our local libraries about FirstStopMV, but are you also doing training with local social workers at Martha’s Vineyard Community Services or our hospital, so they’ll be able to help people find information?
KK: Yes, I just met the other day with Elder Services’ social-work team. I have been going to the main provider organizations, and we’ve been talking about having a bigger community workshop a little later this spring.
VS: It is so important that any provider will steer people right to this website for comprehensive information.
KK: That’s the aim — that this is the first stop for information connected to senior services.
Be sure to check FirstStopMV.Org for any information you seek on this and many more subjects dealing with the elderly. If you have questions, suggestions, or comments, you can contact Karin Kugel at karin@firststopmv.org.