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)

Carol

Holistic Support In Uncertain Times

Carol was the neighborhood mom of my adolescence. Carol’s daughter, Marsha, and my younger sister were the best of friends. While in our youth we were not allies, as we grew into adulthood we grew closer.

I had peripherally understood that Carol had battled a few different types of cancer throughout her life. It’s unfair really, that anyone would have to face multiple cancer fights, but she was known as a fighter. Even in our youth, her warrior spirit was recognizable.

But there comes a day in every warrior’s life when the sword and shield get heavy and it is time to lay them down.

Carol was at peace with her decision to forego aggressive treatments. She was tired and just wanted to BE: BE with her family, BE in her home and to BE with her God.

Carol was at home with hospice care and as so often is the case of only daughters, Marsha was the caregiver of record.

Upon my arrival I found the energy of the house to be chaotic. This is not surprising as our society has created an atmosphere that treats death as a medical event, rather than a holistic experience. Often an individual internally senses when it is time to let go and accepts this new phase of their journey, but in an effort to ‘stay positive’ the family can pressure the patient to ‘not give up’. This fear-based disparity creates a chaotic energy in the environment.

Acceptance is a very different energy than giving up. Giving up is premature disengagement usually stemming from depression. Acceptance is completely different. Acceptance is no longer fighting against the tide, it is allowing peace to take the place of fear and standing in the love of those surrounding you. Acceptance transforms the scared energy into sacred energy.

Carol was in acceptance. Her daughter was in acceptance. The rest of the family, maybe not so much.

Acceptance became our first goal so sacred things could start to happen.

Families need permission to be ok with a patient’s decision. A simple “It’s ok” from someone with experience often opens up a floodgate of relief from self-imposed criticism.

I observed the family as it operated organically. I saw who was comfortable providing what, supported their strengths and nurtured their perceived weaknesses. I could identify small but significant shifts to facilitate the transition from crisis energy to sacred energy.

Once that happened, peace replaced the panic.

I watched as Marsha used the therapeutic ritual techniques I’d suggested to provide holistic support to her mother. Therapeutic ritual techniques not only provides practical emotional and spiritual comfort to the individual, but it also offers an outlet for the underlying helplessness caregivers experience while caring for a dying loved one.

I never orchestrate anything when I am providing holistic support. I aim to be non-invasive and wait for organic opportunities to facilitate sacred moments. When I was alone with Carol I offered spiritual and emotional support and encouragement. When I was alone with family members I listened to their deepest fear revealed and spoke to that.

You can’t know from one moment to the next what will be of significance so I am always looking for signs. While her son was catching me up on his life, I noticed a change in Carol’s face. I knew she was looking through the veil to the other side. She smiled, sighed and said ‘Ooohhh’. I encouraged her to share her vision. She said she saw so many colors. All kinds of colors. Colors she had never before seen. When I asked her what it felt like she said ‘Joy. It feels like joy.’

I saw the glow of her vision reflected on her face.

Carol died surrounded by her closest family members just three days later.

Providing holistic support to those facing a life limiting prognosis whether due to aging, trauma or disease is the greatest honor of my life. I understand the complicated struggle that happens along the journey between life and death. I am comfortable having the uncomfortable conversations and holding space so that families and individuals can find their own path, create their own memories and feel empowered in their own experience.

My greatest wish is to support more individuals and families in shifting from scared to sacred.

Judith Klemos BSW, CTTP, ULC Minister
Healing Rites of Passage
http://www.willowsongmedicine.wordpress.com
219 488 6176

The Elephant In The Room Is Dying

Talking about death and dying is considered taboo. It is as if we have this belief that we will manifest it just by speaking of it. This is no more true than speaking of the sunset causes the sun to dip below the horizon.

Death comes for all of us and yet even that is misleading. Death is not something that comes for us, but that which walks with all of us our entire lives; we merely choose to deny its presence.

Death has been a topic we cover on average once a week in our household; everything from a passing joke about who wants to go first, to a deep conversation about end of life care. I realize, of course, that we are not the norm. 

But we could be – we should be.

Most people when they consider their end of life, discover they are more afraid of they dying part than the being dead part. 

Dying is the elephant in the room. 

With the introduction of hospice and palliative care starting in 1974, we have been cautiously bringing the elephant out from the closet and actually acknowledging it in the corner of the room. With the introduction of end of life practitioners, like sacred attendants and end of life doulas, we are calling the elephant by name to join us in the middle of the room.

Religions refer to ‘life after death’ and ‘eternal life’, which is not a bad perspective. However, focusing on the spiritual eternal life exclusively, often provides a wall of mirrors enabling one to ignore the necessary physical death that segues to that spiritual eternal life. It is a disservice to talk of one without talking of the other. Indeed, this perspective even bypasses the inevitable spiritual and emotional work of dying before the death.

Medical professionals often present treatment options in a ‘this or that’ formula. “Do this or die”, the implication being that “if I do this, I will not die”. Death is presented as an opponent to be overcome in battle at any cost. 

But there comes a point in everyone’s life, when death wins. 

Would it not be better to hold the truth every day that death will come? Would it not be better to live every day with the truth that one day we will have to surrender to death? And that holding that truth might give deeper meaning and richer context to the life we live, up until we die? And wouldn’t that start best with conversations long before we are given a terminal prognosis? 

The message of death is around us from the moment of our birth. Each sun setting on a day is a death. Each new season is a sun setting on a phase in the year. Each New Year’s Eve is a societal sun setting on a year. Each birthday is a personal sun setting on a year. Each death of a loved one is a death of a part of ourselves, and of our life as we knew it, sometimes. Each illness -small or tragic- is a reminder of our mortality.

Acknowledging the presence of death throughout our lives brings a sweetness to each day and relieves us of regret during our dying.

Seeking out someone like a sacred attendant or end of life specialist, to facilitate conversations about end of life choices, long before a diagnosis or prognosis, can allow exploration of alternative treatment options, either along side or in place of traditional ones. It can alleviate making literal life and death decisions in the midst of a life or death crisis. 

It can also result in sharing some of the most real moments of your life with your loved ones.

A daughter said, “we’ve never been here before.” Individually, we have limited experiences with death and even fewer experiences with dying, because in recent times it has been hidden away in hospitals and healthcare facilities rather than in the home.

Our ancestors taught their children that death was a part of life, because they took care of their own at home. Doctors made house calls. Hospitals were reserved for invasive interventions. Homes were built with parlors that were used to wake the body. Mourners were taken care of as well with neighbors tending to the fields of widows and bringing food. Outward symbols of mourning, like dressing in black, indicated to strangers, ‘understand I am grieving’.

That is all changed now.

Today death is seen as a medical event to be avoided, opposed or at least postponed. “Not today” always seems to be the thought, yet in a world where being present and living in the moment is being promoted, ‘today’ is all we have, so at some point, that ‘today’ will in fact, be today.

End of life practitioners have vast experience with many types of dying and death. Drawing on that experience can be priceless to you as you navigate these waters. Turn to palliative care and hospice professionals for end of life medical support. They can help you determine the appropriate course for managing the physical aspects of terminal illness. They also have support staff like chaplains and social workers to manage some of the spiritual and psychosocial aspects of terminal illness.

But not all deaths result from terminal illness.

A son recently said to me, “If someone had told us there was only a 30% chance of survival for my 80 year old mother, we would’ve made different choices. Why didn’t anyone tell us six months ago that this was the beginning of the end? We were robbed of the opportunity for six months of quality time.”

They had four days on hospice. 

Would it have been better for someone to point out that the ability of an 80 year old to undergo aggressive interventions for declining functions was not optimal? Would it have been better for someone to point the way toward six months of ‘last days’ filled with bucket list checkmarks and quality memory making?

The other day a hospital chaplain dismissed the need for my ‘services’ as an end of life doula at their facility because they have an affiliation with a hospice. (Please refer to this page for further information. We seek to complement, not compete. https://willowsongmedicine.wordpress.com/home/ )

In the July 6, 2019 update of the article, The 4 Common Myths About Hospice Care, Angela Morrow, RN writes: 

In 2015, the median length of service for hospice patients was 23 days. This means that of the estimated 1.6 to 1.7 million patients who received hospice services that year, half received hospice care for less than 23 days, and the other half received it for longer than that. In fact, the average number of days a patient received hospice care in 2015 was 69.5 days. 

The Dying process takes time. Because of the highly skilled care that hospice workers can provide to their patients, hospice proves most effective when the caregiving team has time to deliver it. Patients and their loved ones need support, information and medical care. Social workers and chaplains need time to work with patients and their families to bring them to a place of acceptance. Nurses and doctors ned time to optimally manage the patient’s symptoms. 

So, let’s look at exactly what that means in quality time. 

The criteria for hospice admission is a prognosis of six months or less to live. So why is the average stay just 69.5 days? 

In and of itself 69.5 days is not a long time. It is just over two months. Of the long journey many take with a life limiting diagnosis -some spanning years, others months- two months is nothing.

Many do not go into hospice as early as they could because they see it as ‘giving up’. Thus, many – if they’ve even heard of hospice – don’t choose it until they understand that death is imminent. By this time the symptoms of pain and discomfort have taken their toll. There is no opportunity for quality time with loved ones while you are in a state of suffering. 

In their struggle, they haven’t been fighting the disease, they’ve been suffering the disease. By the time the hospice or palliative care teams come on board to manage symptoms and relieve that suffering, the worn out body relaxes and sleeps for the first time in a very long time. 

The time and energy that could’ve been spent taking trips, having last conversations, writing memoirs, saying good byes, enjoying gatherings and celebrating a life well lived has instead been allocated to fighting the side effects of a treatment that did not deliver on the implied promise when the doctor said “do this or die”. 

Because the doctor never said ‘you could do this and die anyway’. 

Now you are (on average) 69.5 days – 9 1/2 weeks – from death once you’ve entered hospice. But those 9 1/2 weeks are not 100% full consciousness. It will take at least one week for the medications protocol to catch up to your pain and symptoms. Perhaps two. There is a lot of sleeping during this time.

Now you’re down to 7 1/2 weeks. People do not often (though it does happen) stay alert and communicative up until the moment of death. Dying takes time. The Hospice Patient’s Alliance states: 

There are two phases which arise prior to the actual time of death: the “pre-active phase of dying,” and the “active phase of dying.” On average, the pre-active phase of dying may last approximately two weeks, while on average, the active phase of dying lasts about three days.

So, now you are down to 5 weeks of possible quality time and again you must allow for decline over that time. While at the beginning of those five weeks you might be alert 6 hours a day, towards the end of those five weeks you might only have 1 hour a day that you feel up to engaging. So, now we are down to hours…

I think you get the point. This is not the recipe for an ideal empowered transition. 

But you might say, “no death is ideal”. Well, let me ask you this: If you accept that your life on Earth has an end time, and that end time is called death, how would you prefer to die? 

Do you envision yourself physically drained, exhausted and unable to communicate the thoughts and feelings of your heart or engage with your loved ones? Do you see yourself connected to tubes and machines or to your loved ones? Do you see hospital staff, sterile environment and procedures, or your family and friends in familiar surroundings? 

I once asked someone what kind of death he envisioned. He said, “fast and painless…but I don’t envision it.” I asked then how he decided what kind of death he wanted, “from seeing the deaths of others.”

There is a cost to every treatment. Sometimes that cost is money. Sometimes it is your hair. Sometimes it is quality time. Sometimes it is just time. There is never any guarantee that an aggressive treatment will give you more time. In fact, aggressive treatment not only impairs quality of life (even temporarily), but it often hastens death.

Just as everyone has a birth story that was written by their mother’s choices regarding pain medications, attendants and location as well as natural phenomena, so too are our death stories written.

There are a million choices between receiving a life limiting diagnosis and the moment of death; each choice is a page in your death story. 

You can’t truly write your own narrative, unless/until you embrace the fact that this Earth adventure culminates in death. Unless/until you are aware of all the options available to you. Unless/until you acknowledge all possibilities.
Unless/until you start having conversations about what resonates with you and what doesn’t. 

Conversing and documenting your death vision years ahead of time, just like a will, relieves you of making those decisions under duress in a time of crisis. More importantly it relieves your loved ones of having to make those decisions for you under duress in a time of crisis.

But if you just can’t imagine doing that, then at least consider utilizing resources like end of life doulas when you have been diagnosed with a life limiting illness or have a significant decline in functioning; and palliative care and hospice when given a terminal prognosis. 

Special note to doctors:

Please, be honest about probable survival rates and the quality of life costs related to the treatments you are suggesting.  

Giving your patients and their families the full picture, is the most honorable thing you can do to enable them to make truly informed decisions. Do not rob them of four months of quality time for six months of extended suffering. Or worst, for two months of suffering.

Do not think that “hope” means four months of suffering aggressive treatment before death, instead of eight months of quality time while nature takes it’s course. 

Explore all possibilities when you have to deliver a life limiting diagnosis. Explain the pros and cons to “doing everything”, “doing something” and “doing nothing”. Explain all the costs -mentally, emotionally, physically as well as financially. Explain that hope may be for survival in the beginning, but for peace in the end – and that is still hope. Explore all possibilities means having a plan b and a set point at which plan b might be enacted. 

And if you cannot comfortably do that, be comfortable enough to bring in someone like an end of life doula to facilitate that.

Patients are not problems to be solved. They are not riddles you must figure out. People are social beings who thrive best, in the worst of situations, with open communication and the support of others. If they are kept in the dark, how will they get the support they actually need? Your patients depend on you for the truth to make the best choices for themselves. This is their only death. You owe it to them to give them all the information as soon as you have it. Remember that while they are not your only patient, you might be their only physician. 

You are part of their death story (even when they survive and go on to die many years later), make sure you are an enhancement to it. 

There are no losers when someone is referred to hospice early. There are no losers when palliative care is consulted right from the beginning. There are no losers when a death plan isn’t needed for several years. There are no losers when end of life doulas are facilitating conversations and memory making a year before someone is actively dying.

Conversely, no one wins when we prolong death by sacrificing quality of life. 

If this resonates with you and you have been diagnosed with a life limiting illness, or a decline in health status, print this out and take it to your doctor as an indication that you want to have an honest conversation about your care.