Best Death Possible (part two) – A Daughter’s Mission

The Difference A Doula Makes

An experienced Death Doula is someone familiar with many faces of death. While death is universal in its presence, it is individual in its experience. In my situation, a Doula would’ve been outside the grief circle, someone who could hold space for me as I expended my energy fighting for my mother. He or she would be able to offer perspective and guidance to spark ideas like bringing my mom’s personal items into the hospital, taking pictures, and bringing in music. A Doula would’ve been grounding for me.

It all happened in a week; Tuesday to Tuesday. When my mom was admitted no one suspected she wouldn’t be coming home. It was too fast for any of us to catch up, we only had a week; but that week will be with me the rest of my life.

We think of Death Doulas, or End of Life Doulas or even hospice as being appropriate only when death is imminent. Our most important work, however, happens long before that time. I chose to refer to myself as a Sacred Attendant, simply because that is what it feels like to me – attending the Sacred. Acceptance of death needs to be woven throughout our lives. It is not a final chapter of our story, but more like a character in the background without the knowledge of its time of arrival, nor the circumstances of it. Conversations about death cannot be reserved for some imagined time in the future when death appears imminent. They also need to include more than just the ideal circumstances because that just isn’t probable. Weaving death positive awareness into things like birthday celebrations, traumatic events, or illness could help remedy experiences like ours.

Thing 6 I’d change is doing a death plan. That first night when she said was scared, I would’ve stayed at the hospital. I would’ve pulled out a notebook and written down all the things she would want at her funeral. I would write a letter she’d dictate to whomever she wanted. I would’ve asked what songs she wanted at the service and what readings she wanted. I would’ve updated her living will with Health Care Representative (Proxy) designation. I would’ve asked her important questions regarding what she wanted to leave behind for all of us. I wouldn’t have hesitated to discuss this because we didn’t think it was time.

As a result of my experience with my mother, and with so many others, I created LIFE’S Book, an opportunity to create a death plan and so much more. Completing something like this with my mother would’ve not only established her wishes, but it would’ve been a bonding time for us. It would’ve also provided some guidance for others who didn’t know what to say while visiting. My mother could’ve asked them to simply pick up the binder and pick a page.

The Gift Of Time

Working in hospice I saw the Gift of Time in action. In a death denying society, the Gift of Time is bestowed upon those who chose to acknowledge time for letting go and embrace it. Peace comes with the embracing of death. Understanding that it is no longer a time to fight against the disease or circumstance, but to fight for magic in the last days. It is here that the term ‘good death’ was coined. A death free from suffering and in the comfort of their own home or home-like environment, surrounded by friends and family.

However, there are so many other types of death happening at any given time, don’t they deserve magic too? People die in car accidents, from falls in their homes, from assaults, and from sudden illnesses like stroke or aneurysms. Where are the good deaths for these people? Where is the dying-specific emotional, spiritual, and soul support for these folks? And what of those who lie down to nap one day and never wake up? Where are the goodbyes for their families? Their last words? And what of those who live alone with no one to ‘surround’ their bedside and care for them in their own home? What of them? Where are their good deaths?

They say there are no do-overs in life, and yet I see Life as one big do-over. Every day I get the chance to do things differently than the day before. I learn from my past experiences, I do not view them as insufficient or lacking in any way. The things I wished to do differently led me right where I am today, offering my support to others to reduce these events, by having conversations earlier than ‘imminent’. By doing this differently, I am honoring my mother’s death.

I was just getting my feet wet in the local community network groups talking about dying and death and…

Then CoVid19 Hit

The deathbeds now are even more sterile and are missing most or all family and friends. Fear of death hangs in the air like grey clouds in the Michigan winter sky. Still there is no acknowledging it. No preparations. No magic moments within conversations. Not even while quarantined together have there been conversations about death wishes. There’s just been blaming, conspiracy theorizing and more denial.

What’s emerged is a grief crisis. Compounded complicated grief where before there would be straightforward grief. On top of losing loved ones, we are losing our traditions for grieving. No matter your spirituality, religion or culture every aspect of grieving has been affected. Everything from not being able to be at the bedside to hold a hand, to not being able to have a funeral, with a million things in between.

This results in bereavement counseling being more important than ever. A counselor or a group to hold space to offer comfort and support. There will be more turbulent feelings. More uneasiness. More anger. More regret.

We will shortly be coming upon the first death anniversaries and the grief crisis will hit people unexpectedly. How we honor those anniversaries will be most important and if we do it right, will spark new traditions by creating meaningful ritualistic ceremonies to honor that date. We can only hope that by the time the first of the death anniversaries from this pandemic time roll around that the pandemic has subsided enough to allow more ritualistic ceremonies.

This is something I am preparing. This is something most end of life consultants are preparing.

My Mission

Ask 100 people what their idea of a ‘good death’ is and statistics say that 80 of them will say ‘at home surrounded by family and friends’. Some might even choose a facility with a ‘home-like environment like a hospice house, surrounded by family and friends’. Perhaps because they don’t want their family to have to live in the place where they died, or maybe they do not wish to burden their loved ones with caring for them. Whatever the case most people will not say ‘in a hospital’ and yet that is where 60% of deaths take place.

Why?

Some of it is due to death phobia. The medical community, in particular, has a hard time considering death, as was evident with my mother’s team. They are taught that death is an enemy to fight against at all costs. That cost is too great however, when it robs people of precious time with loved ones.

My mission is to offer the ‘best death possible’ for everyone. None of us can change the circumstances surrounding our death or that of our loved one. However, within the scope of that circumstance we can offer the best death possible.

The best death possible means embracing the circumstances as they are and doing it ‘your way’. It doesn’t mean giving up, so much as it is giving in to the flow of life. I have had the privilege of witnessing many magical life-changing moments that took place at a bedside. I want to bring that to anyone who wants it.

Unlike a hospice referral, to employ a Death Doula there is no need for a terminal diagnosis and 6 months natural life expectancy prognosis. The decision rests solely with the individual or family to initiate at any time. It can be initiated years before the actual death, making preparations, having conversations, and creating legacies. This starts building a relationship with someone who is then familiar to you at the end of life, providing all that much more comfort.

Embracing a best death possible philosophy provides opportunity for patients and families of trauma victims the same Gift of Time as hospice patients and families. It offers the same post-death follow up and support as well. It offers something more than what has been offered to date. A Sacred Attendant or End of Life Doula isn’t meant to replace Chaplains or Social Workers, it is something additional that offers a broader blanket of comfort care to a patient and their families. The service isn’t paid for by insurance or Medicaid/Medicare, so it isn’t restricted by regulations for reimbursement. The Attendant is free to provide whatever non-medical service is right for the individual and the family unit, and to provide it as long as necessary. She or he is not limited to a ‘justified’ one hour visit once a week.

Think what peace of mind this service could be to a son who lives 1,000 miles away from his mother who has dementia and lives in a facility. That he can have someone trusted to be there as many times a week as he wants.

What comfort it could be to a daughter from out-of-town to have in-town support as she lovingly cares for her father in his home.

What clarity it could bring a family whose members all seem to be on different pages.

What a difference it would make in the hospital to have compassionate end of life support available to individuals with sudden illness or decline, or traumatic injury and their family units.

And what of this…what if hospitals offered this service to family units right now, BECAUSE of CoVid protocols and restrictions? Why not give families something to replace a small bit of what has been taken away? It’s the right thing to do.

The services of Death Doulas, End of Life Doulas, Sacred Attendants, etc… will be unique to the individuals that provide them. In overview terms, they provide non-medical support to clients and families. Specifically, they might make a well-timed phone call or text; Be a visitor who is comfortable sitting in silence; Ask just the right question at just the right time; Or offer a listening ear you are not afraid to bend. These are the tangibles every End of Life Doula (EOLD) might offer. The innumerous intangibles are impossible to list here though because they are less about doing and more about being.

Peace Be With You…And May You Be Peace

If you or anyone you know feels they would benefit from this service please speak up to your doctors, your medical team or locate your nearest End of Life Doula through the End of Life Collective https://collective.round.glass/End-of-Life/about or the National End Of Life Doula Alliance https://www.nedalliance.org/ or reach out to me personally at healingritesofpassage@gmail.com or via the contact form on this site.

Best Death Possible – Part One -A Mother’s Death

Today, December 13, 2020 is the fifteenth anniversary of my mother’s transition. Until this time I haven’t shared the details of my experience of her death.

There are so many things I would do differently, most are details that would matter only to me, however one thing I believe could’ve changed the outcome.

I want to say right off though, you can’t be a doula and be a daughter at the same time. You just can’t. There are family dynamics, emotions, fears, hopes, anticipatory grief, expectations, and underlying currents at work that you can’t, as a daughter, step out of enough to BE a doula. That said, it doesn’t mean you can’t be a great daughter, in attendance, advocating and emotionally supporting your mother, but I wasn’t that either.

I know this is long so I appreciate you even considering to read it all. It is not meant to be an all inclusive recount of the events, but rather a highlighted exploration of needless trauma. If I were to write it as an account of the experience there would be many many more details about the emotional and relational aspects.

Tuesday

It started on a Tuesday with a call that Mom was in the Emergency Department with difficulty breathing. I was at work and rushed over as soon as I could. I found her in a cubicle sized exam room when I arrived. She had her chemotherapy appointment a day or so before and said she just wasn’t feeling right and was having a hard time breathing.

When her cardiologist came in my mother introduced me like this, “Dr. Kramer, this is my daughter Judy. She hates chemo.” To which he replied, “Yes, it is nasty stuff.” He stated that Mom had congestive heart failure and they would be running additional tests.

The hospital was full, she would wait hours in that cubicle sized room until a patient room opened up. I was working a relatively new job as a therapist in a psychiatrist’s office, and had to return to work, but visited her between patients later in the day. I found her that time in a room that I would’ve sworn was a janitor’s closet earlier that day. It was set off by itself long past any other patient rooms, and as far away from any staff as you could get. We sat for a while and talked about what the doctors were saying and what tests were going to be done. She waited until I was halfway out the door, late for my next appointment, to say, “I’m afraid.” I replied, “I bet you are. This is scary.”

Thing 1 I would change. I would’ve turned around and stayed with her. It turns out the patient I was late to see had cancelled and it was not the policy of the office to call and let therapists know when scheduled appointments cancel. My last appointment of the day was a no show. So, yes, I would’ve stayed with her. I would’ve explored that fear more. I would’ve been a great daughter who was attentive, present and emotionally supportive.

Wednesday

When I returned on Wednesday I found her in a different room wearing a rebreather mask. She was worried about the Christmas cookies she had committed to baking for the hospice she volunteered for. The same hospice I worked for just months before starting my new job. She wanted me to call the volunteer director and let her know the cookies wouldn’t be done.

At this point the diagnosis changed to add pneumonia to the congestive heart failure. I remember seeing the x-ray of her lungs…It looked as if they were wearing woolen sweaters. Where there should be clear darkness, there was fuzzy white. They started her on antibiotics.

Thursday

When I returned Thursday she was on a different type of mask. Her breathing was no better. Her lungs were no better. I knew from my years of working as a hospice social worker that chemo compromises the immune system and that if she was not responding to the antibiotics in 24 hours it was not good. I emailed my Aunt because my father was not ready to call the family in for visiting. My Aunt was not only my father’s sister, but she was my mother’s best friend since long before they were married. There was no way I wasn’t going to tell her what I knew.

By Thursday night the medical staff was out of options. The pulmonologist wanted to do a bronchoscopy to get a biopsy of her lungs to see what kind of infection it was so they could target the treatment. The problem is that after the bronchoscopy she would need to be on a ventilator for an undetermined amount of time. This is something my mother was adamantly opposed to.

Ten years prior she completed a Living Will specifically declining artificial life support. As we discussed the treatment options around her bed she spoke as loudly as she could through that mask that she did not want to be on a ventilator. However, she was ignored. My father is a very intimidating man and overrode her decision; insisting the doctor do the test. Later on, when I would bring up the Living Will Mom signed to attempt to advocate for her, he jumped up, towered over me and yelled, ‘WHAT piece of paper?’

When everyone left the room my mother again reiterated to me that she did not want to be put on a ventilator. We talked about it awhile. I encouraged her to talk to her husband, again, but she wouldn’t. So, I walked her through a process to get her to a place of peace about being on a ventilator short term, if it meant possibly finding an answer. She made me go to her house to bake up the cookie dough she had started.

During this whole time I needed to also be present for my twelve-year old daughter. I had pulled her out of school twice during this time because I wanted her to have every option to have last memories with my mother. Every day my mother got worse and every day I thought would be her last. I was also keeping my mother’s older sister informed who was living in a nursing home. I continued to keep my other aunt informed, as well.

Friday

Friday morning they did the bronchoscopy and by Friday night she looked like a blown-up balloon. During the bronchoscopy they pierced her lung and she was filling up with air. Bloody drainage came from the chest tube and she was indeed on that ventilator. Her doctor went out of town so we were left with an associate. The results of the bronchoscopy were inconclusive so an infectious disease doctor was brought on to determine whether or not to try fungicides or to start her on penicillin, which she was allergic to.

Saturday

By Saturday she was in multi-system organ failure and treatment options were still being discussed with my family. I was hearing lab results familiar to me from my work in hospice. I started to push the medical team about these things and realistic expectations. She agreed to be on the ventilator for a period of three days. She was only continuing to decline since. I failed at keeping her off the ventilator; I would not fail at keeping my promise that it would be short term. That night my father decided that my mother should not be left alone and he wanted me to stay at the hospital.

During the night my mother woke up on the ventilator and wanted my sister, my father and my husband there. She didn’t want to talk until they were there. She wanted my sister and I to get along. She wanted us to watch over our father. She wanted him to stop smoking. She wanted my husband to take care of me. And she wanted to say I love you to all of us.

The staff set me up in a room far away from my mother’s to stay. I wasn’t allowed to sleep in a cot or recliner next to her bed. What was the point of staying if not in her room? It was all too much for me by that time. I called my Aunt in the middle of the night because I just didn’t have anyone else to talk me off the ledge I was on. I’ll never forget the comforting voice on the other end of the phone saying, “Hold on. I’ll be there tomorrow” as I sobbed for the first time.

Sunday

Sunday morning came and there had been further decline. We as a family started talking about removing her from the ventilator, only to find out there was no supporting documentation in her chart by the doctors. Apparently what they were finally saying to us and to the nurses was not what they were documenting. So, again one by one we had conversations with each doctor about her condition and the reality of needing to let her go. By Sunday night we were talking about taking her off the ventilator Monday.

Monday

Monday came and there were faith-based hoops to jump through to get the approval to take her off the ventilator. This was the first time we spoke with anyone from palliative care and I only remember it being one brief conversation. Her doctor returned from out of town and was surprised that she had not recovered. He made his first call to her oncologist who said, “Sometimes patients respond to chemo like this. Give her steroids.” This was an emotionally devastating blow because she had been in multi-system organ failure for days now. Her cardiologist said she would likely not wake up and would need long term care placement if she did recover.

I mean it when I say my mother would rather be dead than be institutionalized living on a ventilator.

Thing 2 I’d change. I would’ve called her oncologist myself the first day she was admitted. She kept saying that she felt fine after chemo but then a day later she didn’t. I wrongly assumed that the medical team INCLUDED the oncologist. I do believe this one thing could’ve changed her outcome.

By Monday afternoon we had everything in place. I was prepared to let her go that afternoon and then I was told that it would be another day. My father wanted to wait until Tuesday.

I lost it.

I have never sobbed so hard, either before or since, as I did then. It was all so exhausting and now to make my mother suffer another day seemed cruel. I just kept yelling, ‘she deserves better than this.’ I understand – now, outside my own grief – that he needed a day to prepare. He had not been able to grasp reality days before as I had been. I had been fighting for days to end her suffering, while he’d been fighting to keep her here.

Tuesday

Tuesday morning came with yet another blow. My mother’s case now needed to be sent to the Ethics committee for approval to remove her from the vent. Why at each turn there was another hurdle someone didn’t foresee I did not understand. It was a Catholic hospital and they didn’t explain in advance the protocol to remove the tubes once in place. I was livid and unable to get face time with the bureaucrats causing my anger.

Tuesday afternoon the tubes were removed. My sister, my father and I were around her bed with our hands on some part of her when she exhaled for the last time, some 45 minutes after the machine was turned off.

I Did The Best I Could

Thing 3 I’d change. Her transition was sterile and un-ceremonial. Aside from the blanket I’d bought her for Christmas and gave her early, there were no personal effects. Nothing of my mother was in her death. I’d have music playing. She loved music. Johnny Mathis maybe or Ann Murray. Maybe Johnny Cash. Or maybe some Boots Randolph. I would’ve brought crystals to surround her. Anointing oils to bless her journey and thank her body for its service. I would’ve chosen a poem or a prayer to recite with all of her family present, not just the three of us.

Thing 4 I’d change, though not necessarily in order of importance…I’d take pictures of her in the hospital. Especially before the ventilator. She would’ve hated it though – no make up, hair unkempt, face mask pressed into her cheeks. As it is though I don’t know when the last picture of my mother was taken.

Despite these things I’d change, I know I did my best, but I still don’t feel it was good enough. We all did the very best we could within a system fraught with death denial. My energy had been used up on decoding the things that weren’t being said, forcing them into the air where my family could pluck them at their ready, then begging for the right things to be done.

This is why thing 5 I’d change, not in order of priority, is hiring a death doula (or better yet I wish the hospital had this service.) This one change would’ve made all the other changes for me. A Death Doula, a Transitions Doula, an End of Life Doula, an End of Life Specialist, a Sacred Attendant…whatever name they go by they offer the same thing – holding dedicated sacred space specific to the transition of loss and supporting the best death possible.

(Continued in Part Two- A Daughter’s Hope)