A few of you asked me to clarify what I said in my last post.
Re-making health care to be about health, as hospice makes death about hope, is an earthquake to the medical model of fixing ....
How can death be about hope?
I slipped that in because it is a truth about good hospice and palliative care. It is also the roots of reconciling with loss of any kind.
• It is NOT about putting on a happy face sticker (...over an empty gas tank dash indicator).
• It is NOT about accenting the positive...like the musical
• It is about grounding in the truth of where we are, and asking the question:
What is it you hope for?
Where we go from here... depends upon where we are at.
Most hospice teams tend to disrespect and disregard the benefits of denial. In my training for 'companioning' those in loss, the professor says:
Denial is useful and self-protective... to a degree.
- Dr. Alan Wolfelt, Center for Loss and Life Transitions
It takes time to gather ourselves, to approach the unknown...and death is the great unknown. How do we live with uncertainty?
We need practice at it. What is, really, just another day of cleaning out your closets...or vacuuming the dust bunnies. But if you have NEVER cleaned the closets, it is going to be a bigger job than if you did had done it regularly. Dust bunnies can be overwhelming when you when you have avoided and accumulated them for a lifetime.
Metaphysical dust bunnies
I am attempting lightheartedness here, but it is also true. If you are a hoarder of dust bunnies, your task at the end of our days here will be tougher.
Why do we spend our days pretending that we will not get old, never get to our end on Earth, or leave this existence? I see a direct relationship between denial at the end of life (EOL) and messy closet hygiene. Like anything, we need practice for these big milestones. Many people do their best NOT to show up for death - anyone's death - even their own. They don't visit sick family members; they try not to visit even their own mother at the end because they 'don't want to remember her THAT way'.
I am saying...this life is practice for our own good end.
I have seen many family members collude in this EOL denial by multiplying it by THEIR OWN denial. Or holding out 'for a miracle' until that dying breath...so there is not time to reconcile, to say goodbye, to forgive the dust bunnies of feud and disconnection which are blocking the door.
It is the door to a 'good death'. (This is not an oxymoron.)
In hospice, we say a good death is a peaceful death where the pain is controlled. The measure of pain is TOTAL pain. This includes emotional pain and 'spiritual' pain. We are now back to the original question of this post:
How might hospice make death about hope?
The answer here is:
• Hope meets between the possible and the probable.
• Hope is common ground
• Hope takes many forms...
The A.M.E.N. Protocol*
Many folks look for a miracle. They pray that they be spared the bitter pill of loss. It can look a lot like denial. It may be and it may not be. Statistically, prayer beats most miracle drugs for beneficial outcomes. As a chaplain it is important to stay engaged in this difficult, INCREMENTAL and iterative conversation. In fact, there is a palliative protocol for it. It is called the A.M.E.N. Protocol.
• Affirm the patient's belief. (I hope with you...)
• Meet the patient or family where they are. (I join you in hoping and praying...)
• Educate from the role as a medical provider (...and here are some medical issues..)
• No matter what: assure the patient and family you are committed to them...no matter what happens...(We will be with you every step of the way...") which tends to be more doable in hospice than palliative...
It asks the question: "For what purpose is this miracle?"
"The physician may respectfully inquire. He or she might learn,...that a man's first grandchild will be born in a few months. The hope may be to simply cradle that baby for a few sacred hours before succumbing to his disease. The physician, on inquiring, may learn that a mother hopes for remission to see the last of her children graduate from high school or college. Hope takes many forms. 'Even dying people have work to do or work to finish: relationships to enjoy or mend, goodbyes to say, lessons to teach their families.' The only sure way to know what hope means for the individual is to inquire, respectfully and reverently."
Even if the patient (and or family) are insisting on a miracle. The miracle may be just another day to wait to see their daughter flying in from the East coast. It is what hope looks like at the end.
Please find the PDF for further reference. This is a brilliant and useful study.
* Cooper, Ferguson, Bodurtha, and Smith. The Sidney Kimmel Comprehensive Cancer Center, John Hopkins, Baltimore, MD. Download PDF here:
It was quite a week– The world played the part of "Goldilocks" and I was the three bowls of porridge: one was too hot, one was not hot enough...but I ended the week with it being 'enough" to just be of service.
As a working chaplain, who supports several hospices at this point, I have many congregations. I like to say of who an Interfaith chaplain serves:
"I support people of any faith or no faith and all the rivers which run between those two."
I have come to think of my congregation as singular but this week has teased that idea apart for me.
First visit: too, too Christian
I visited a patient who was new to me; he was from a patriarchal culture and a faith tradition (and country...) which is not known for its progressive views on women. He was not likely to be of a Christian faith, but I guessed wrong as did not respond to my greeting of Al Salame Mehaham. He was reported by the team to be energetically "in denial" about his illness, and his prognosis. He was alone in this country without his family. He had already declined a Spiritual Care visit with me over the phone and had refused the medical social worker as well.
If spiritual support is not wanted, it is, of course, his right to decline. I usually seek to refer a patient to their own local clergy to be of support, if possible.
However, declining chaplaincy blinds the team.
Communication can be more difficult. Much of a chaplain's scope is about communication and being an advocate to the medical team for the patient's and family's views and preferences.
This patient was declining and the case manager made an appointment for me to show up the next morning with little explanation. I was happy to have the opportunity to support his man. I prepared with appropriate books, liturgy from his faith tradition - the Koran, (and the Bible just in case...) with a trinket which was not iconic: a river rock with Love engraved, and my secret weapon - homemade candied orange peels. Gifts are a universal offering of support and a way in - to develop a relationship of care and trust.
It was a first step, which usually works.
Upon entry, the patient was confused; he did not seem to understand. It was unclear if the confusion was dementia from his disease or his command of English language. What was seen by the team as unhappiness, and perhaps depression seemed to be a defensive stance against this confusion. By happenstance an Arabic-speaking neighbor stopped by and translated, which improved everything. Providence, for sure was at work. It was also clear that he was not enthusiastic to talk to me, as a woman, as a "Christian" which was his view of who he saw. However, when this neighbor translated my offering of the homemade, candied orange peels as "like life we take the bitter with the sweet...I am here to see what we might do to make this day a little sweeter for you.", the gentleman's eyes twinkled and there was a small breakthough.
I asked him if he was Muslim. He agreed that he was. I asked if I could I reach out to a local Imam for him, he said no but then he was inspired to lead his own prayer in Arabic which was part song and part words.
It was beautiful and it was enough. He left our palliative care to hospice care soon after and I did not see him again. Sometimes all you can do is begin...and it may be enough.
It is an employer's most unexpected nightmare. In one phone call, suddenly your entire company is brought to its collective knees.
This happened recently in a hospice company in which I was consulting. As a hospice bereavement professional, these accidental and unexpected deaths are not the same as deaths in hospice where we have the gift of more slowly accepting the idea of the loss of a loved one. These kinds of deaths are more likely to be experienced like trauma where people react more unpredictably and may trigger some other undigested incident in our pasts that has yet to be mourned.
No Self-Protective Denial is Available in an Accidental Death
In a sudden death, we do not have the self-protective element of denial, which shields us from the immediate and full mental exposure of loss and the impossible reality of the death of a loved one.
Safety First - Assess the Staff for any Likelihood of Doing Self-Harm
If the lost staff was likely a suicide, the likelihood of responsive suicide in other staff is very slightly elevated by a few percentage points according to Dr. Thomas Joiner. His recent research notes three major factors for people with traits for at risk - not just the standard questions about if they have a plan and means for self-harm. Ask them if they are
Other ideas to support people who are themselves at risk:
Be kind, for everyone you meet
is fighting a hard battle.
–Rev. Dr. John Watson
Steps for employers:
I was called to go to a patient's bedside to sit vigil...he happened to be Catholic.
Sometimes the bedside vigil happens - but less than you might imagine. The conditions of hospice are chaotic. We pretend we are in control, and we are of some things, but life happens. Today, the IDG (or IDT) team communication was well oiled and functioning as it should be. And we had time to respond appropriately, which is mostly out of our control.
Previously, this patient had several ups and downs as it typical of the end of life. Last week, when she came onto our service, she was talking about getting back to her old neighborhood and house...I thought she might make it, too, which does happens.
The Catholic Faith Tradition and the Sacrament of the Anointing of the Sick
As a devout Catholic who went to mass three times a week, there was a question that I immediately looked for an opportunity to weave into our beginning conversation. This is tricky–because she does not know me. We do not yet have a relationship of trust. But when an opening did present itself, last week she was very clear with me that she did NOT want a priest to visit. A eucharistic lay minister to give her communion was good but no priest.
When any patient comes onto hospice service, as a clinical chaplain, Medicare asks us to open the subject, as gracefully as possible, of any spiritual anxiety they may have. It is a beginning point to help them explore their inner landscapes. Have they made peace with this condition they are in? Or are they still wrestling and resisting ? The questions are more important than the answers...and that they know the chaplain or the medical social worker is able and trustworthy to speak with them, should they wish.
Family is not always easy for the patient to talk with for so many reasons. I am Switzerland and an interfaith chaplain. I respect all faith traditions. Either I don't have a dog in all the religious diversity and contentions or they are ALL my dogs. The answer probably doesn't matter because it is the same result. I respect them as voices of the Holy One of Many Names.
The relief that some patients have in having the conversation is what matters.
Essential Chaplain Superpowers: a Bluetooth Speaker and iPhone
I studied while in seminary with a wise and eloquent Dominican Nun. I know a lot but am quite humble and without assumptions to be complete support. Generally speaking, this is a healthy assumption for all. However, I speak a dialect of fluent 'Catholic" with the help of my Bose Bluetooth Speaker and iPhone superpowers.
The patient was non-verbal at the point I arrived. It was going to be a couple of hours until his people arrived so I called up YouTube and put on a high mass which lasted for an hour and a half. It was amazing. The patient seemed to like it - not because he said so (he was non-verbal but not unresponsive...). I explained who I was and what I was about to do and checked in with him regularly.
I wiped his face with a wet cloth and sat with him.
Questions of Readiness or Denial?
But to respect the Catholic faith, the question of 'would you like a blessing from a priest?' is an essential one. The phrasing is a 'softball' way of asking if they want an Anointing of the Sick sacrament. A 'yes' can be an admission of readiness to pass from this life or not. The answer is always illuminating of their process. (Are they in denial? Are they hoping for a miracle? Do they really want to try and cure this illness...which at least one of their doctors has already recommended to them as an unwise use of their hope?)
The conversation about spiritual anxiety or spiritual readiness is an important conversation for all patients, but there are different ways to gently inquire of a patient who is not Catholic. But, that is another post.
A hospice wedding can be a beautiful thing.
It is not common to be asked to perform a ceremony in hospice, but when a chaplain is there are many things to address before you say yes. I performed a wedding last week and it was amazing but only after I had done my homework.
First the your IDG (IDT) team must be consulted...
Hospice runs on our interdisciplinary teams. Each of us have a point of view and we need them all here. Your medical social worker (MSW) might have insight as to what the underlying psycho-social situation is. Money and inheritance issues can complicate the simple loving decision to want be married. Doctor, MSW, Case Manager (CM), and aides may have deeper (and different) insights into the possible complications and motivations which may or may not be achieved by a wedding.
Review your hospice's policy and procedures
Ask your administrator to sign off on the wedding. Do they have any concerns or written policies which they can offer as guidance? This can be tricky ground, but better for those who have tread it before you.
Find out more about what the bride and grooms want or need.
What are their expectations about ...the surviving spouses needs. If it is social security they are out of luck. It takes a year or year and a half before widow's or widower's benefits may be bestowed. If the spouse dies before that time period, the surviving spouse does not receive benefits.
Why now? The question's answer is not always obvious.
Logistics: Can both parties actually ambulate... for the license?
The good news here, (and not well known) is that most county registrars who deal with marriage have a process where a sick bride or groom may not attend to the license.
The ceremony can come to them but there is a bit of paperwork to do to get them there. In addition to all the usual marriage license paperwork and information, you will need:
And it could just be love...
A wedding ceremony in hospice can be a beautiful moment...
It can be a place to say I love you, to resolve important issues, to say a good bye and to have comfort from pain while you do.
Statistically people live longer in hospice with a terminal illness and with a better quality of life. And sometimes they live long enough to get hitched. Amen.
A remembrance ceremony is a requirement by Medicare for all hospices to do each year.
The ceremony does not have to be expensive. As in life, we use the resources which present themselves and weave 'what is' into a beautiful thing to come together in community and remember...
Here are are some ideas which we have done or attended:
Schedule Before the Holidays.
Thanksgiving and the end of year holiday and Christmas are a difficult time for someone grieving. It is hard to 'celebrate' when our hearts are weighted down by loss. Schedule the celebration in the fall before this time.
Be sure to send your bereaved some helpful holiday survival information on grieving & mourning.
Weave in the Local Context
This year we created a Candlelight Remembrance Celebration on a Wednesday night, which just happened to fall on Halloween this year. We incorporated the festivities of the local neighborhoods kids. (It is hard to be sad when presented with a 2 year old bunny rabbit or a 3 year old Spiderman.) The children helped lighten our spirits as we came in but the service itself was very contemplative. A Five Candle Remembrance Ceremony. If you wish to know more about it. Email us and we will give you the PDF.
Collaborate with Other Chaplains
This year we also had three hospices join to do one ceremony. Small hospices can do this, especially if the chaplains are friends, which we were (and still are). It shared the load; we consolidated ideas, harmonized in singing a hymn, and it was a completely lovely afternoon.
We created a ceremony of stones and roses. Upon arrival, we gave everyone several colored glass pebbles (because one chaplain had them left over from a wedding...) which they held during the ceremony. After the names were read, each person came forward and let go of the pebbles they were able to and threw them into the water (big container that held the roses) , they kept some pebbles ( such is the nature of grief...we release only in good time) and each person picked up a red rose. Lots of opportunity here to normalize grief and explain about the grieving process etc.
Use Candles for an Evening Ceremony
This is an easy way to set the tone of the sacred within the most secular of venues. Add some iPhone hymns or soothing background music and you have set a safe place for all to be welcomed.
Hold it in Nature
There is a lovely Japanese Tea Garden near one of the hospices I support. We have offered several celebrations there, if we want to meet before sunset (when it closes). Their gazebos are beautiful, just the right size, and free.
We are borrowing the beauty of the nature to set a place for remembering well. Other ideas include local parks or senior centers which rent out space. Small churches or other religious venues might allow you to gather for little or no money if you give them enough notice.
Read the Names with a Bell...
Reading hundreds of names can be a bit much. We have switched readers every ten names and rung a Tibetian bell for creating a bit of space and the sheer pleasure of hearing it ring.
Please comment with ceremonies of your own here, if you feel so moved.
Webster's is not necessarily going to be in alignment with this, but for clarity into the mourning process let's define them this way:
These are concepts that Dr. Alan Wolfelt, PhD has parsed and clarified in his many books and articles. It is also the philosophy and approach that Garden of Change takes.