Yesterday I had this beautiful visit with a hospice patient and her adoring adult child who had been taking care for years and before that taking care of another ... also for years.
This serial caregiver was exhausted, overwhelmed and moving toward burnout.
I got it...because I was it. She was on the tipping point into resentment from simply being willing. Our conversation eased her off the ledge because her feelings were reasonable and common ... but they were new to her. They were troubling because love isn't suppose to feel that way but overwhelm always feels that way.
Here is my patient's Happy Valentines Day 2022 gift to you today:
May you be be surprised by the love...that loves you back.
A personal & professional view of medical-aid-in-dying
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As a working chaplain, who supports several hospices at this point, I have many 'congregations' so to speak. My standard intro is this:
"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.
- What is getting in the way of whole person care?
- What might support it?
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.
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.
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.
- We cannot incrementally accept it over a period of months
- We cannot deny the diagnosis or prognosis
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
- Feeling like a burden on other people. That their death is worth more than their life.
- Feelings of loneliness or social disconnection. This is key.
- Have learned to overcome the fear of self-harm. Do they do risky behavior where they seem not to care about their own welfare.
Other ideas to support people who are themselves at risk:
- Suicidal crisis are almost always temporary
- Problems are seldom as great as they appear at first
- Reasons for living can help sustain a person in pain
- Do not keep suicidal thoughts to yourself
Be kind, for everyone you meet
is fighting a hard battle.
–Rev. Dr. John Watson
Steps for employers:
- Notify people in a timely manner, and as appropriate for their personal relationship with the deceased. Call them personally or have a close friend call them, or meet with them.
- Reach out to staff's family - offer sincere condolences. Ask about funeral arrangements. Some families prefer private funerals or memorial services.
- Have a staff meeting where you can begin to share the grief and memories of the staff member
- Give info from family - Talk about what to say to clients, patients or vendors
- Begin processing reactions to death
- Share memories and reflections
- Discuss things staff might do to support each other and family
- Offer individual and group counseling sessions. Refer for therapy, if appropriate.
- Remind staff about self-care and respecting their energy levels...
- Hydrate and eat well
- Get extra sleep/ nap or lay down 20 minutes twice a day
- Be kind. Grief is real damage. It is a wound that heals from the inside.
- Post the National Suicide Prevention Hotline. (800) 273 TALK (8255) Encourage them to use it if they have questions or thoughts about self harm.
- Memorialize the loss
- Memory Books - have staff bring in photos of lost staff member and write notes in book about some helpful or cherished memory that family may well receive to sustain them.
- www.Mealtrain.com. or some other service that helps organize meals for family. Staff can cook a meal on a specific day, or contribute money for a meal.
- Have a staff memorial service
- Pave a path back to normal.
Set a tone for respect of lost staff but deal with pressing business. Office will be in the fog of grief for a while. Try not to push affected colleagues too hard at first. Reassign work for minimal commotion.
- Assign check-in buddies - formally or informally per offices culture.
- Allow people to take some time off / Make special accommodations for an employee in need.
- Have food in the office and an atmosphere of hospitality.
- Encourage staff to connect with their local faith communities
- Encourage them to go to the funeral, if family is open to it.
- Have a memorial service just for staff
- Make arrangements to get personal effects to family.
- Don't immediately advertise for a replacement. Let desk stay as it is for a few weeks.
- Assign check-in buddies - formally or informally per offices culture.
- Standard employee change logistics:
- Ensure coverage/continuity
- Determine person's company commitments
- Disable computer access, badges, etc
- Place voicemail into announce only mode
- Re-record the person's voice mail or forward the calls.
- Set-up auto respond on email
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:
- Affidavit of Inability to Appear and Request for Issuance of a Marriage License which is usually notarized.
- The hospice medical director (aka doctor) letter affirming that patient is unable to appear due to infirmity on hospice stationary.
- Whatever else your County decides it wants. Hence the research needed to be done by your team.
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.
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.
13 Month MCofP Bereavement
Accidental Workplace Death And Grief
Annual Remembrance Ideas
Anointing Of The Sick And Hospice
Catholic Hospice Questions
Hospice Annual Celebrations
Hospice Spiritual Care
Medicare Hospice Required Bereavement
Mourning And Grieving