Death, Dying & Dessert in Livonia

I’m starting a new discussion group in Livonia, my old stomping grounds. This one is called “Death, Dying & Dessert” and it meets at the Livonia Civic Library every second Monday, 7 – 8:30 pm, starting October 12. I had a wonderful experience today at a church doing a Death Cafe. The same topics came up that appear at the Ann Arbor Death Cafe. It will be interesting to see if the Livonia group varies much. Fears, wanting to be able to control how death happens, trying to accept mortality, the need to discuss all this… Talking about it in a discussion group is like practicing talking with one’s family.

I hope you’ll consider joining us Monday, October 12, 7 pm in Livonia!


Advice to someone who wants to do a home funeral

Dear Paul,

Thank you for contacting me; it was a blessing to speak with you yesterday. I consider the work I do informing families about natural death care to be a ministry and I thank you for giving me the opportunity to help you.
The plan for your mother that you have outlined to me is very lovely and do-able, and will be a dear way to honor your mother and her passing.
Your mother is at home in hospice care – this means that when she passes, the hospice nurse will come to the home. S/he “pronounces” the death and initiates the paperwork (death certificate), which will be sent to the chosen funeral director. S/he calls the funeral director and tells them that you will be contacting them when you are ready for them to come to the home in a day or two and help you go to the church for the mass. From there they will proceed to the cremation. The ashes will be returned to you a few days later.
This arrangement allows you to lovingly care for your mother’s body at home, including cleaning, dressing, “laying out” and cooling with dry ice, and visitation with family and close friends. This time in the privacy of your home is a very sacred and special time during which people typically pray, visit, relate stories and memories, share food and fellowship and grieve together. After this time, the circle is widened as you move to the church for the larger funeral and visitation with the open casket.
There are several things I recommend you do or think about ahead of time. We mentioned several of these and I have added a few others.
  1. Discuss your plans with close family and caregivers. This allows them time to ask questions and volunteer to help you. You will need help to do all this at home.
  2. Contact the funeral director you know and tell him what you’d like to do:
    1. That your mother is at home in hospice care and you’d like to care for her body there for a few days before having a funeral mass and cremation. He will want to be sure you know how to properly cool her body. He will probably put a 48-hour time limit on it – don’t worry about this at this point
    2. He may be able to help you figure out the payment contract you have through Neptune Society and work with that
    3. I would count on additional charges for the transport to the church, the obituary, the consultation and other paperwork
  3. Decide what type of casket you would like to have for the open casket viewing in the church. The funeral director should be able to provide a very nice “cremation casket,” which you can decorate or make to look nice, or you may want to purchase something on-line. This is something we didn’t talk about and I could go over with you in a family consultation. You probably don’t want to purchase something through the funeral home which would cost a lot of money.
  4. Discuss your plans with the hospice nurse or chaplain and elicit their support
  5. Contact the church as see if they will have any concerns with an open casket of an un-embalmed body. In the past, I have spoken with church personnel who have wanted education and reassurance.
At any point, please don’t hesitate to contact me again with questions. Please give out my contact info to anyone else who would like more information. As you can see, even though what you want to do is very straightforward and simple, it gets more complicated when you have to involve and educate other people, especially those who are accustomed to doing things another way. They may have concerns and it may feel that they are putting up roadblocks, but I assure you this is all very do-able. I am here to help you with this. I have confirmed that the funeral home I know would be able to help you if yours doesn’t work out.
In order for me to be able to continue this ministry, I ask that you consider making a payment for my consultation. As we discussed, I ask $100 for a family consultation and $400 if I come to the home after the death to continue to guide you through the process of caring for the body. However, I accept whatever you feel you can pay.
Bless you in this journey,

Alleviating Suffering

We would have less trouble promoting Palliative Care if we called it “Alleviating Suffering.”

Doctor: “I know you’re suffering; I’m going to refer you to someone who can talk to you about ways to help alleviate your suffering.”

Result: Easier for doctor to say, easier for patient to hear.

What if it was a normal part of healthcare to be concerned with alleviating suffering at all stages of life, whatever the illness, whatever the suffering?

Problem: Alleviating suffering by addressing aspects of the whole person (physical, psychological, social, spiritual) using a multitude of disciplines and approaches (medical, social work, chaplain, dietician, aides, volunteers, alternative and complementary therapies) is not a part of healthcare throughout the lifespan. It just isn’t. Our current healthcare system is fragmented; it is based on treating one aspect of health at a time, by one person who specializes in that one aspect. We are not looking at the forest for the the trees. Or however you say that. And people, by the way, are suffering throughout life.

By inserting  the “specialty” of “Palliative Care” at the end of life, it is linked with hospice care. In our current system, we have made palliative care (alleviating suffering) a specialty, which means making a referral to yet another team of “experts.” We have segmented “alleviating suffering” apart from healthcare throughout the lifespan. What this means is that someone must be really sick and dying in order to receive palliative care. Palliative care has come to mean giving up or comfort care, when really it is just good healthcare. I say that palliative care shouldn’t be a specialty; it should be part and parcel of good healthcare in all settings and in all stages of life and illness. Then it would be more palatable, more accepted, and easier to obtain. It would not be a last resort.

We are going about this backwards. Really, “palliative” concepts should be a part of good healthcare from the beginning. But most of us don’t get good healthcare. We only seek and receive medical care. And most medical care only addresses the physical person, and not even usually the whole physical person, but just one current specific concern. How many times have you gone to a general practitioner for a backache and been told that you would need to schedule another appointment to talk about your plantar fasciitis? And many of us don’t even see a general practitioner – we just go to a specialist to begin with. We pick the area that is the biggest need and then see that specialist. If you have other needs, you have to get a referral to another specialist. I know this is my dilemma. My backache may be stemming from many causes – overwork, poor posture, stress, a recent injury or strain, foot problems, my exercise routine – but no one in my medical care system is going to address all of these issues and help me coordinate care. I’m not receiving palliative care. (See underlined section above for definition of palliative care.)

If Palliative Care was a part of healthcare throughout life, it would naturally be a part of end-of-life care. If addressing the whole person, not just the spleen, was a practice throughout life, it would not be so difficult to make the shift to addressing the needs of the whole person at the end of life.

I am not going to say it. I am not going to be accused of romanticizing the past again. I am not going to say that back in the old days the small town family doctor did know her patients well and did do a better job of addressing all of their needs. There, I didn’t say it. That is such a limited view 🙂

But, really, if we had a healthcare system that was based on addressing all of a person’s needs, perhaps a general practitioner-nurse-social worker-midwife combo-pack at every clinic, and it was free, and you could drop in anytime and talk about all of what was bothering you, we would have a lot more “alleviation of suffering” going on. And a lot more informed choice and preventative care going on. Not to mention fewer hospitalizations, less over use of technology, fewer health crises, less overall pain and suffering, etc., etc.

And guess what? In this model of being able to address the whole person and all of their healthcare needs, Palliative Care would be going on throughout life. The concept of alleviating suffering by addressing all of a person’s needs, not just treating a physical condition as if it was separate from the body-mind-spirit, would be normal, it would be included, and it would be familiar. It wouldn’t be so foreign to healthcare practitioners and patients to understand that there are times when physical treatments only, treating with more medication, more procedures, more tests and more hospitalizations, is not necessarily what the patient wants; it’s not necessarily meeting their goals and improving their quality of life. Patients want whole-person care, not just at the end of life. Palliative care should be included in all healthcare, period.

Specialists are good. Specialty teams are good, especially palliative care specialty teams 🙂 But here’s another problem with the system: Currently, most palliative care is hospital-based, and it is only offered when a patient has about 1 – 2 years to live. A referral from a doctor in the hospital is necessary in order for a patient to receive care from the palliative team. Requiring a specialist to make a referral to palliative care is problematic. At the very core of most hospital specialist is the belief that if I just look harder and do more, I can still cure this patient. Palliative care is associated with defeat, of giving up, of accepting death. Specialists, by definition, are not looking at the whole person! They specialize in one aspect of the person – a physical aspect. Requiring them to step back and look at other aspects, and then to make a referral that is perceived as an admission of failure, is not usually happening! It’s too late. Not literally, but figuratively. It’s too late in the system. We need to incorporate the concept of palliative care much earlier.

How do we make this change?

  • Patients asking for it – yes
  • Palliative care teams in the hospital educating specialists – yes
  • Doctors in clinics planting the seeds for it – yes

But what else? How can we really make palliative care a part of normal healthcare? This is the question people are asking me. I have this conversation every week with a new person. We talk about this at Death Cafe. I talk about it in class, with my friends, even at parties. We have to make “alleviating suffering” a common concept that is addressed throughout life. Because suffering is a part of life.

Fight and Failure and the Effects on Grief

If we “fight” cancer, then when we die is it a failure? What does it mean when someone has a life-limiting illness but people don’t talk about it and instead say they really “love life”? If someone accepts that they are not going to get well again, does that mean they “don’t love life?” I live near a large university who’s motto is “the victors.” That’s fine for a sport’s team, but when it’s all over the walls of the hospital, are you a “loser” when you die? How do we accept “Being Mortal” (the name of the best selling book by Atul Gawande) when our language around illness and death clearly does not?

*****How does this affect our grief? If we don’t believe “It’s OK to Die” (Monica Williams-Murphy’s powerful book), how do we make it “OK to grieve?” We have distanced ourselves so far from the normalcy of death it is now pathological (extreme, excessive, abnormal) to die. This has also distanced us from, and pathologized, grief.

*****Look at our funeral rituals and mourning practices. They aren’t helping us any. We instantly move from a paradigm of fighting illness to an urgency to accept death and say good-bye. The body, which becomes putrid and dirty the moment it fails, must be disposed of rapidly. We don’t encourage seeing the body right after death; it has no value. It is not “normal” to sit with the body, to touch it, nor heaven forbid, to hold it. We are expected all of a sudden to shift from unacceptance to acceptance and move on. And it only gets worse after that.

*****Americans today seem to think they have two choices for what to do after the [fight and defeat of] death. The body is removed from us quickly as if it’s dangerous, as if the sight and feeling and sound of being around it will damage us. The professional, whom we’ve paid to antiseptically care for this body, either

  1. cleans it, preserves it, makes it look alive again, displays it, seals it away in something that looks like a jewelry box, buries it it in a hole you can’t see, and covers it with perfectly green grass
  2. OR takes it privately to be cremated and then gives us a flowerpot-looking thing full of what we are told are it’s remains, which we then dispose of. We don’t see the body at all.

This way of dealing with the dead body puts the emphasis on hurrying up and dealing with the grief over the loss. As we are expected to not linger with the body, we are expected to not linger with our grief. We are expected to move through it rapidly, one year at the most, get over it and move on. I think THIS is the dangerous thing; in order to fully accept something we need to fully see it, and that takes time, more time than we are allowing ourselves these days.

*****Our American funeral practices deny us time with the body. It is valuable to be with the body after death. It can help us. In fact, I think it is normal to want to be with the body. After caring for someone in life, it is normal to care for them in death. Taking our time to sit with the body, to touch it, to hold it, to wash it, and to anoint it actually benefits us and assists us to come to grips with and accept what has happened.

*****If death is not a failure but a normal end to life, then maybe the dead body is not a failure but a normal part of the end of life. If we accept the dead body, take our time and care for it, then maybe we can accept our grief, take our time, and care for it. No need to hurry. Time and space to see, time and space to honor, time and space to feel. The gift to us in being with death and not distancing ourselves but feeling it, seeing it and touching it, is to help us understand it, and our own emotional, psychic and spiritual responses to it. If we don’t deny death or the dead body by immediately removing it and sterilizing it, then maybe we won’t deny our feelings about it, remove them and sterilize them. We can more easily integrate them, grow through and from them, and get along with them. This is normal grief.

*****New funeral practices, new ways of seeing and caring for the body, can help us. This is so very important to ourselves, our culture and our future.



Surrounded by strangers and talking about death

This is Death Café. Feeling invigorated, alive, renewed, peaceful, informed – actual words used by participants at the end of a morning “drinking tea, eating cake and talking about death.” It’s obvious; we are all going to die so why not get used to it? What holds you back?

Topics from last Saturday’s Death Café:

  • Putting people away at the end of life because we don’t want to deal with it
  • “Assisted death” or “aid in dying” rather than “assisted suicide”
  • Alternative burial and disposition methods: “promession” (freezing and vibrating to become powder that can be “planted;”, open-pyre cremation in the US (, the mushroom burial suit (, three-story core composting system ( and green burial (
  • German burial system: reusing the plot after 30 years (no embalming? biodegradable casket)
  • Preventing unnecessary or unwanted treatment at the end-of-life; being allowed to die “naturally,” DNR orders and how to obtain them
  • CPR – originally developed to be used on healthy people; when used on “dead” people in the hospital or care facility it has a low success rate, measured in percentage of people who will then be able to go home (after CPR rescue)
  • Know your rights!
  • Death over Dinner – a very structured program that is aiming to accomplish the same thing as Death Café: Let’s Talk about Death!

It was a wonderful mix of first-timers and repeat Death Café participants and we all had a good time. Tell that to your friends who think it’s morbid to talk about death!

*****Find a Death Café near you, or start a new one. For more info, visit or contact me. I’ll be presenting about Death Café at the annual Hospice and Palliative Care Association of Michigan conference on May 29 in Kalamazoo, MI.

I welcome your comments; please register and share your thoughts! If you have any trouble, let me know.