It’s the Only Thing I have Left for You – Guest Blog

When the Best Medicine Isn’t Traditional Medicine – This is the story form a true healer and I’m grateful he allowed me to post this on my site.

It’s the only thing I have left for you

I was a brand new physician on call and he had fallen off a barstool about a week earlier. Eventually he had trouble breathing and the ambulance took him to the Emergency Room. A chest x-ray, then a CT scan showed he had bled into the pleural space around his right lung and collapsed his lung almost completely. He had two broken ribs and was short of breath and I could see every breath was painful for him. He winced when I examined the bruised area below his right armpit and he stopped his breath short when I put my stethoscope in the area of his broken ribs.

He didn’t complain and, in fact, he never complained. He had to be taken to surgery for a decortication of his right lung, which meant the surgeon had to make a large incision between his ribs to go in and scoop out and peel off the clotted blood that was stuck to his lung. He had lost almost half his blood volume and needed transfusions before he went in to surgery. After surgery he had to have a tube going into his chest to pull the air and blood out continuously so his lung could gradually inflate itself again. He was on a ventilator for a few days and the tube was in for almost a week before the drainage decreased enough to pull it out.

He was polite every morning when I went in to round on him and he smiled at me every time, even when I could clearly see he was in pain. Once the breathing tube came out, he was able to talk, but he never volunteered any information and his answers were brief. He would never call the nurse to ask for pain medicines because he didn’t want to bother her and said he knew she was busy. He always thanked me for coming in.

He recovered from that completely and his collapsed lung just became a part of his history. We grew to really like each other and I was always happy to see him on my schedule. He had some abdominal pain at a visit several years later. I ordered x-rays and they showed pieces of shrapnel from a war injury in Korea. He had never volunteered that information and on further questioning, he also had shrapnel in his left knee. The shrapnel wasn’t the reason for his pain and it never really bothered him and he declined to have it removed. I made a notation in his chart that he was a war hero and needed to be treated with respect and for the most part the Emergency Room doctors honored that.

He continued to drink and off and on would end up in the hospital because of it. During his binges, he stopped taking his diabetes and high blood pressure medicines and eventually he was admitted to the hospital with a heart attack. This damaged the left side of his heart and made him prone to getting congestive heart failure, or fluid in his lungs. He didn’t come in for visits very often and most of the time I saw him was when he was hospitalized for something.

His diabetes continued to worsen and I could never convince him to take his insulin regularly. Consequently he suffered a stroke that made his right side weaker and that caused him to fall several times. He walked differently than he used to and he ended up with a blister on his right foot. That went on to become a sore that just never healed and he finally ended up with osteomyelitis, or an infection in one of the bones in his foot. This is very difficult to treat with antibiotics and he eventually had an amputation below his knee. He was never able to get the hang of a prosthetic leg and spent most of his time in a wheelchair.

His amputation made it impossible for him to live on his own and he was in a nursing home for about a year, then a group home. He always said the food was fine, the staff treated him well and he denied any pain. The staff brought him in for regular visits and his blood sugars and his high blood pressure finally came back into control.

I tried a few different ways to ask him about his war injuries and he always changed the subject. One time his eyes got moist when I asked him about Korea and his injuries.

“I couldn’t save him.”

“Who?”

“It doesn’t matter. It was a long time ago.” He changed the subject and he would never talk about it again.

His circulation was so bad that his left foot turned dark and he didn’t tell the staff members about it until his foot was cold. I saw him in the clinic and directly admitted him to the hospital. It was too late to save his foot and he had an amputation of his left leg just below the knee.

He came in a few times for urinary tract infections and he came in for regular visits, but years of uncontrolled diabetes had already done irreparable damage. His eyesight was failing and cataract surgery only helped a little. He was hoping laser treatments to his eyes would bring back some of his vision, but the treatments were to try to prevent further damage.

He went into renal failure and I had to stop one of his heart medicines as his kidney function was worsening. I referred him to a kidney specialist, but he didn’t understand anything that was said to him when I asked him about that visit.

“You’re my doctor. I’ll trust you to know what to do.”

He had episodes of congestive heart failure off and on and he usually recovered with a few days in the hospital on intravenous medicines to get his kidneys to get rid of the fluid buildup.

He was admitted for a similar episode and this time his x-rays showed a pneumonia filling his right lung. His temperature was high and his labs showed he was fighting an infection. He was agitated and moaning and needed to be sedated. He pulled his IV out and kept trying to get out of bed. His niece was his only relative and he had signed forms giving her permission to make decisions for him if he became incapacitated. He made it clear he did not want to be on a ventilator again.

Two days of IV antibiotics made no difference and his pneumonia was getting worse on repeated daily chest x-rays. His lung sounds were coarse and wet. I gave him a diuretic to try to pull some fluid off his lungs and it dropped his blood pressure too much to repeat it. He would intermittently answer questions, but mostly was restless and not responsive.

His niece finally asked if we could just make him comfortable, as he just wasn’t getting better and at 86 years old, didn’t have any reserve left. We stopped his antibiotics and I stopped all medicines except those for pain and agitation.

The next morning I went in and he was still restless and not responding to his nurse. His lungs sounded worse and his breathing was labored. I discussed plans with his nurse and she left the room and it was just he and I. I pulled a chair up and moved closer to his ear so I could talk to him quietly.

“It’s Dr. Vainio. I remember what you told me a long time ago. There’s no way you could have saved him. No one could and it’s not your fault. You did your best and he knows it and he always knew it.

I have something for you and for him. It’s the only Ojibwe song I know and it was given to me to sing in the American Cemetery in Luxembourg. I sang it there for my wife’s great uncle Johnny Mercer and everyone who died on that B-17 bomber and for every warrior there. It’s a Soldier Song and I want to sing it for you now.

It’s the only thing I have left for you.”

I didn’t have a drum, so I held his hand and I tapped out the drumbeat on the back of his hand with my other hand and I started to sing.

I was uncertain at first, but about halfway through the song, he began to relax and my singing became stronger. His grimace softened and he started to breathe easier and he stopped his constant restless moving. His hand had been simply resting in mine and he began to hold my hand and he held it until the song was done. He didn’t open his eyes and he didn’t say anything. After a minute or so his hand stopped squeezing mine. I held it for a little bit longer and I put it back on his chest.

His niece was with him and she called me after he died later that morning. “He was really calm, Dr. Vainio, and he died peacefully. What did you finally give him that made such a difference?”

“He was a soldier. I just gave him permission to die with honor.

It was the only thing I had left for him.”

posted with permission of Dr Vaino, originally posted In Indian Country
Arne Vainio, M.D. is an enrolled member of the Mille Lacs Band of Ojibwe and is a family practice physician on the Fond du Lac reservation in Cloquet, Minnesota. He can be contacted at a-vainio@hotmail.com.

Choices in Dying? Not without education and preparation

Beam me up now, Scottie sounds like a nice, quick and clean escape from life.

 

Admittedly, I’ve thought this myself despite my experience of providing comfort during the dying process and bearing witness to beautiful deaths. How will I really feel and what will I choose when faced with my own death? My 40 years of observation in this field tells me that while I think I know that answer, I may not, but what I do know is what will be needed to help me make end of life choices.

 

Facing dying is a dynamic process, and what we fear or believe now often changes prior to the moment of death. This process is also transformative, for ourselves, and those we love. So how do we – and can we really – prepare for that moment?

 

Advance Directives are limited and often fail us for a variety of reasons. Will you be prepared or protected by a reimbursed visit to talk with your doctor about the use of machines or a hastily completed directive done at the hospital? Probably not.

 

Why? Because 1) we are humans who, when facing death, find out we aren’t ready to let go, and 2) we are often not informed of the markers of our decline or told directly that death will arrive within months, weeks or hours. When we are not given this information, we assume the fight is still on and the battle can be won. Therefore those advance directives we filled out as guideposts are mired in the heavy fog of poor communication and information at best, or misinformation and dishonesty at worst.

 

In my years as end of life educator, I’ve observed that the key to making the best choices is that they must be truly informed ones. We must know what to expect regarding disease progression, the management of changes over time, and the dying process. Talking about the dying process is particularly omitted in today’s conversations.

 

It pains me to observe that most healthcare practitioners, and even new hospice workers, are not trained to understand and talk about the dying process. For those we serve, this omission contributes to panic, the inappropriate utilization of interventions and unprepared deaths. This is why one third of those under Medicare spend their final 10 days in the intensive care unit. This is why increasing numbers of people with cancer are receiving chemotherapy 2 weeks before they die.

 

They didn’t know they were dying, and they didn’t know they had choices.

 

We talk around death in the guise of preparing for it. Some will intellectualize the process and others hope signed forms will save them from an unwanted scenario. Some get lost in philosophizing to distance themselves from the physical reality of dying. Some focus on their spiritual beliefs, finding comfort about what they believe does or does not happen after their body dies.   But what do they have to go through physically to get there? That’s where the biggest fears and biggest gaps in knowledge reside. It’s these fears that contribute greatly to the desire for aid in dying, and that’s why we must talk about it.

 

My mission is that end of life decisions not be based on fear, misinformation or lack of information.   When we have the proper knowledge, we make informed choices, and fulfill our right of autonomy and self-determination.

 

We all have work to do to improve how we prepare for death:

 

You as consumer must be willing to ask the difficult and necessary questions. We in healthcare must make sure we are training folks to answer those questions honestly and compassionately, or be able to refer you to someone who can. We must paint the picture for people about the short and long term benefit and burdens of potential treatments and not just provide an abstract with vague brush strokes.

 

If you have several medical issues, knowing the actual cause of death of each one may allow you to choose how you want to die. For example, dying of anemia or kidney failure may be more manageable or comfortable than dying of certain tumor growth or advancing dementia. The omission of this information leads to uninformed choices. You need to be clear in each step of the process how you individually define quality of life and then create goals with your provider that are actually achievable.

 

I am acutely aware that the choices I make don’t just impact me. They will impact my family emotionally, financially and spiritually. It will impact their bereavement and how they will approach their own dying.

 

For me, death with dignity is being prepared, being supported, and getting exceptional comfort care from my providers. It also means seeking a state of grace where I gratefully receive the loving care of my family and friends, while being in my own bed with my dogs still competing for my pillow. What does it mean for you?

 

Death with dignity can happen with or without a hastened death.

I have no issue with choices in dying as long as they are informed. Knowing there is choice has provided a comfortable backdrop as people learn about managing their disease. Current data reveals that in the end, many of those who obtain a prescription for a hastened death never use it.

 

It’s not my job to tell you what you should or should not choose regarding your own dying. It’s our job in healthcare to make sure that you never have to say, “If I had only known….”

 

Education in dying before choice in dying.   We have work to do

I want to die in my sleep….but you shouldn’t.

“If I had my choice, I’d rather to die in my sleep”

Pretty common preference, right?

Here’s the good news:

Thanks to the wisdom of our body and how it shuts down to take care of you, that’s exactly what happens at the end of an illness or old age.

Over time, the individual has less and less energy, sleeps more and more, until he finally slips into a coma. While in that coma, the body continues to shut down and die. Depending on the illness one is succumbing to, that coma may last seconds or weeks.  So most people die in their sleep, as they wished!

Now here’s the perplexing news:

Although this is something we hope for ourselves, we often don’t trust or honor this process when it is our loved one that is dying.

The reasons can be simple: not understanding the dying process, the pain of letting go, the fear that there is something we need to do, or not do, to keep our loved one with us a bit longer.

When terminally ill individuals don’t want to get out of bed, or when they sleep more often, many concerned families declare they are over-medicated or perhaps giving up and willing themselves to die.  This can ignite a desire to stop a process they believe is hastening the dying.

There is also talk about ‘conscious dying’ and the belief that using any medications as death draws near will rob that person of final communications.

There is fear that medications are hastening death.

These fears must be acknowledged and addressed. It’s not an easy balance:  we want our loved ones comfortable, but worry about over-medicating. We want to honor the natural process of dying,  but we miss the conversation and hugs as they sleep more.  In my 40 years as a nurse, I have witnessed very few ‘Hollywood-type deaths’ where the person could say a few words just before dying. Usually they are in the coma, still able to hear you and feel the energy you bring to the bedside, but unable to respond beyond an occasional grasp of fingers, or a single tear of good bye.

Navigating the dying process and comfort needs requires the compassionate guidance and support of those trained in palliative and hospice care.

There are many individuals who will experience no uncomfortable symptoms at all and never take any medications in their finals days, yet the gradual increase in sleep occurs just the same. This is the natural process of the body shutting down. The presence of any symptoms depends on the illness and medications are there if needed to keep the person comfortable, not ‘knock them out’ or hasten death.   No one wants to think they or anyone they love will experience discomfort before death because needed medications are being withheld simply due to lack of understanding.  It’s that fear of physical suffering that can cause folks to say they would prefer a hastened or assisted death.

Know that increasing sleep is a natural part of dying.  Honor that process.  Provide necessary meds to promote comfort.  Surround them in your love as they slumber.  You are committed to the comfort of your loved one, just as you hope others will be committed to your own comfort when your time comes.

If you want to die in your sleep, let them die in theirs.

 

For more information about the dying process-  See “Dying to Know – Straight Talk About Death & Dying” on this website.

They are not dying because they are not eating….

…they are not eating because they are dying.

The decreasing appetite and subsequent weight loss associated with terminal illness or natural end of life is an emotionally charged issue.  Because we associate food as a necessity for health and well-being,  we also associate the act of providing this sustenance with nurturing and comfort.  That approach  changes when managing advancing illness and age, and it’s hard to wrap our heads around the idea that pushing food may now be creating more problems.

For the purpose of this blog, I am assuming we ruled out reversible causes of weight loss such as nausea, mouth sores, pain, poor eyesight, cognitive changes, constipation and the like. Of course we want to address and correct those issues.  I am addressing the natural changes in appetite in advancing illness and age.  

A lack of appetite is often a natural and normal part of the body beginning to shut down.  The desire to eat and the ability to process food will diminish over time. Depending on the particular illness, this can begin days, months and even years before death.

It’s hard to see your loved one losing weight and growing weaker.  It can be scary.

A common, albeit incorrect belief,  is that the person is starving to death.  As a result of this fear, families may push spoonfuls of food into the mouths of their protesting loved ones.  Nursing homes and hospitals can often initiate artificial feeding.  Because we all want what is best for those we love, we need to know that  forcing food when the body says ‘no’ not only creates conflict between the individual and well-meaning provider,  but it can actually create discomfort, increase physical complications and yes, even hasten death.

This is why end of life education is critical.

The body has it’s own wisdom and to promote comfort we must understand and honor that.

Despite our best efforts, Alice’s cancer was not responding to her chemotherapy and she was quickly losing weight and muscle mass.  She was so thin, we could see the tumor growing in her belly.  Using its natural wisdom to protect her, her body released a chemical that shut down her desire to eat, resulting in a process that promotes comfort by releasing our natural endorphins.  That way, Alice was comfortable and did not experience hunger.  

Not understanding this process at the time, the healthcare team utilized what was thought to be the best medical judgment; we provided total nutrition through her veins.  

The next day I was on duty, I saw that the tumor had tripled in size.  

We had only fed the tumor.

We had done nothing to promote her well-being and in fact, increased her discomfort. 

There is a time and place for medical interventions.  They must realistically match the status of the illness and be an achievable goal.  Over a hundred studies have shown us that in the very end stage of an illness such as dementia and stroke, tube feedings may actually hasten death.   In addition to loss of appetite, those individuals may begin to lose their swallow or gag reflex.  They can choke while eating.  Although we cite risk of aspiration as a reason to place a feeding tube, its use can actually increase the likelihood of aspiration pneumonia, because when the stomach is overfilled, the fluid backs up and then goes into the lungs.  Other risks include the surgical insertion of a tube and complications from the decreased mobility when hooked up to a tube feeding.

You want to best care and don’t want to feel you did too little.

You also don’t want to compromise their quality or quantity of life.

The dying process is still not taught in many medical and nursing schools.   Your best resource is a palliative care specialist or end of life educator who can talk about the natural and normal changes a body will go through over the course of a terminal illness. With this understanding you will focus on that which honors these changes and promotes comfort, thereby providing the best care.

So what can  you do now, that feels as loving and nurturing as when you made their favorite foods?

Comb their hair, provide a gentle massage of the hands and feet, look through old photographs and reminisce, enjoy music together. Feed their spirit.

That kind of nurturing is never contraindicated.

 

For more details about how the body changes, go to www.bookaboutdying.com or the books and videos page on this site.

Pets and Grief: A Family Affair

4adb4dc5c7ef3e522c5bd8a9c1961431Getting ready to meet the woman I was admitting to the hospice program, I was cautioned that her animals were very bonded to her.  To gain access to her I must first gain the trust and then permission of her dog and cat, who were also in the twilight of their years.

The dog was lying by the entrance to her room, and I was quickly greeted by a wagging tail and contented grunt as I scratched his ears while murmuring what a wonderful dog he was to love and protect his mistress.  I then proceeded into the room.

The very large cat sat on the lid of the bedside commode, positioned next to the bed in which the frail woman lay.  I sat down in front of the cat and put out my hand, also acknowledging what a wonderful companion she has been.  She eyed me up and down and once satisfied I was no threat, reach out her paw to gently touch my hand.  It felt like I was being anointed.  I nodded to the cat and assessed her beloved owner.  At the end, I again nodded to the cat and this time thanked her for being such an attentive pet and I was allowed to give her a neck rub.  But only for a minute and then I was motioned away her her standing up and pointing towards the door.  The dog then walked me from the door to the waiting family.

In addition to talking about what to expect in the ensuing final days to weeks, we also talked about the animals and their need for closure and to grieve.  Since I was only the admitting nurse I did not see them again.   A month later,  while waiting in the hospital hallway for another family member who was in surgery, the daughter noticed me  quickly ran up and pulled me aside.

She excitedly told me how grateful she was we had talked about the need of the animals. Her mother had died peacefully a week prior and while the family gathered and cried together, the cat jumped on the bed.  She said, “I was about to push her off, but I remembered what you said.  Instead I watched.”  She described how the cat slowly walked over the the face of her deceased mistress and gazed into it for some moments.  She gently patted her faced twice and jumped down.  It was good bye. Recognizing the need of her beloved pets, the  the family then picked up the dog and placed him on the bed.  He also examined his mistress, licked her hand, and jumped off.  The dog and cat huddled together while the family did the same.

Per my recommendation, they kept an article of her clothing, her nightgown, on which the animals slept  for several days. It was on that nightgown that the cat died peacefully 3 days later.  I was told the aging dog was still curling  up on it.  The family reached out to each other, 2-footeds and 4- footeds alike,  both grateful and comforted in sharing their loss.

Grief is a family affair.

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Holding On, Giving Up or Letting Go : Finding Closure on the Road to Good Bye

We need you and can’t lose you now. You have to fight this so we can have more time. Don’t give up!

 

It may feel like person is choosing to die when they no longer want to fight. That can leave us with a sense of abandonment if we believe the person really has a choice. But in truth, there comes a time where we must all come to the natural end of life.   That knowing and acceptance often comes to the person long before the family.

Let’s face it. It will never be a good time for anyone we love to die. The desire to hold onto every minute, with the hope for more minutes and hours and days, is normal. The pain of loss is the price of love and we want to put off that pain as long as possible, but at what cost?

Ann was dying in the hospital. Her husband and two children knew she would never return home, and they remained by her side. After 3 days, I was surprised to see Ann was still clinging to life, but I understood when I overheard the whispered pleading of her young adult children.

They were grasping the hands of their barely conscious mother and kept repeating,

“You’re going to get better mom. We’ll get you out of here and when you are stronger, we’ll take that trip to Hawaii.”

 What Ann heard is that her children were not ready to let her go.  

So she stayed, just barely holding death at bay, despite her body working to shut down.

 I shared this interaction with the husband and he then took the children to another room to speak to them. They returned 10 minutes later, red-eyed but resolved.

They again sat by their mother and grasped her hands and this time tearfully whispered,

“We love you. We’re going to miss you.

But we’re going to be ok.”

Ann relaxed and died 10 minutes later.

Sometimes people need permission to leave. They may need to know that who they leave behind will be cared for, whether it’s a spouse with Alzheimer’s, their 20 cats, or even that their daughter who has yet to find a good man. Finding out and addressing their concerns is helpful in the letting go process.

There are times when the dying person knows how hard this is for the family, who is holding on, and may wait to die until they step out of the room or fall asleep at the bedside.

There are times when the family is ready and ‘releases’ their loved one by declaring:

“It’s ok to go now, Grandma”.  That’s ok.  Only need to say it once, though.  Now Grandma also needs to let go, as does her body.

You say feel it’s never ok to say that since it’s not ok that the person you love is dying.

That’s ok, too.  Good byes and closure can come in many forms.

Tell your favorite stories.  It affirms the life you shared while letting the person know how they will be remembered.

Holding on, letting go – a process to be recognized and gently honored for everyone involved.

The Need to Touch

Walking by a hospice room,  I noticed an elderly woman, reaching through the side rails of the bed in which her husband of 62 years was dying.  She was understandably in pain as she stroked his hand and spoke softly, tho he was already in his final coma.

I instinctively walked in and asked her is she needed to climb onto bed and hold her husband – spoon him – one last time.  Her face lit up as she exclaimed, “Oh, yes!”

These were his final hours of life, their final hours as a couple.

This last memory is important, and with this ‘permission’,

she was able to hold the love of her life as he died,

and he was embraced by her love as he died.

What could be better?  A bittersweet but important memory.

We often forget how important touch is, how important it is to hold our loved ones near the end.  Sometimes it’s fear of hurting that person or a fear that embracing may be considered inappropriate at this time.   In healthcare we need to actively  normalize it, encourage it if comfortable for both parties.    It’s calming and can provide a sense of ultimate peace.

It is is a more common practice to encourage parents to hold their dying baby.

But I have to say, that it it’s my 63 year old son who is dying,

that’s still my baby.

I need to hold him.  I want to be supported by staff to make it possible to hold him as long as he is comfortable with that.  Move the pillows, arrange any tubes.   This intimate and sacred time will never be repeated.

Encourage touching, holding, talking. In the end, for both people,

this may be the most healing activity we can render.

Finding the Threads – Unraveling Grief

Part 2 of the Legacy of my Father, June 10 blog

My 18th birthday

Five months to the day after my father’s suicide.

The unwanted gift of tears arrived without warning,

without my permission

bursting through my wrapping of protective armor

that had been slowly eroded, not strengthened,

by the process of denial and minimization.

 

I had thought I held my grief well, the right way,

strong and silent

hiding behind my invincible shield,

proudly displaying our family insignia of “Really, I’m fine.”

 

But on my 18th birthday, pretense fell away

I fell headlong into the void when no father was there catch me and  say ,

“Happy Birthday, pumpkin head”

Why was I crying?

It had been five months – shouldn’t I be over it by now?

I judged my tears and perceived this weakness harshly.

Everyone else seemed to be fine.

But in truth I never asked

for fear my truth might be revealed. I wasn’t fine.

I didn’t know they were also hiding behind their own shields.

 

I did not understand for many more years

that the ever unfolding journey of grief takes a lifetime.

 

I initially avoided it by working hard to achieve – to over-achieve, actually,

To ward off my new sense of feeling unworthy.

A truly worthy child would not have a parent leave under such horrific circumstances.

Unexpected deaths can leave behind

the unwanted accompaniments of increased vulnerability

and fear of more abandonment by the survivors.

I did not know these feelings set up home in my unconscious mind, becoming drivers in my world.

 

It took another 10 years to realize I was angry.

I was angry my father killed himself

I was angry I had to try and understand and be sympathetic of his choice.

I was angry I was left to live with his decision, not his presence.

I was angry at myself for not being brave enough to tell him I loved him before it was too late.

Wait – how can someone be angry at a dead person,

a person whose acute suffering led to a desperate act? Have I no heart?

More self-judgment

until I began to recognize there are the many faces and phases of grief.

 

As a nurse on the cancer ward,  I became the inadvertent student of the patients and families I served.  Mortality rates were high in those days and I was grateful they  acted as my teachers and guides for the journey of death and dying, grief and loss.

I saw those that expressed their grief with loud wails and flailing arms.

Externalized grief was foreign to me, and initially I wanted to run,

but I learned to stay and be present despite my discomfort.

I witnessed the judgments when family members expressed their grief differently,

whether by demonstrating avoidance, stoicism, beating their chests, or crying.

It was easier to share grief with those who had the same style of grieving.

Other styles were deemed maladaptive.

 

I saw the guilt and fear that accompanied grief.

And I saw the anger.

“I begged you not to smoke and now you are dying of lung cancer, deserting us!”

“You don’t love us enough to try harder to stay alive for us.”

”If your faith was stronger, you could have beat this”

I recognized that beneath the anger was simply grief and loss.

Lost opportunity. Lost presence. Lost future.

A compassionate and understanding heart was the only treatment for that pain.

 

In understanding and accepting these feelings in others, I began to understand and accept my own.

By removing my protective shield to embrace my history and vulnerability

I could be more fully present,

without judgment,

a healing presence for others

to help them face the fears and impending loss,

share love openly, prepare for closure,

and thoughtfully create the legacy they will leave behind.

Death is hard enough.

Things left unsaid or undone is harder

for both sender and receiver.

 

My work with others became a healing path for me.

The unwanted experience that was initially thrust upon me when I was 17,

was unwrapped and unravelled over time to reveal the gift hidden deep inside.

By taking the threads from my initial unraveling from my father’s suicide,

I could weave a tapestry for my own life, personally and professionally,

transforming the painful lesson into an opportunity to serve those who are facing the end of life.

 

For that, I am grateful.

How will I die?

The question is not if we are going to die, but how we are going to die.  Too often our own fears or misconceptions keep us from having this discussion.  We then run the risk of making the decisions that are not congruent with our vision and wishes for a good death.  Therefore, timely, compassionate and honest education about the natural process of dying is critical to making difficult end-of-life decisions.

“How will I die?”                                                                                                                                                                                                         As patient or caregiver, do you know you can and should ask this question?                                                                                                As healthcare provider, do you have the language and comfort to respond to this question?                                                                  We all share responsibility in making sure we can navigate this difficult conversation.

It’s important to understand how an illness changes over time, and recognize the natural wisdom of the body at it approaches the final months and days.  That will help promote comfort and identify when it’s appropriate for aggressive treatment that may be focused on cure or stabilizing the disease, and when it is best to focus on aggressive comfort care only.  When we don’t know or ask is too often when a person ends up one of the 20-30% who die in an intensive care unit.  When we don’t know we may inadvertently push interventions or even food that creates more discomfort or even hastens death.  No one likes to be surprised or left with the devastating thought, “If I had only known…”.

Find out about the status of any disease, the benefit or burden of proposed treatments and the realistic goals of care, and weigh that against what the person describes as his quality of life.  Illness is a transformative process, so goals and perceptions can naturally change over time.  Communication over the course of illness is always the key.  Making any decisions based on fear or lack of information can carry a high cost physically, emotionally and financially, so it’s not just your right, it’s your responsibility to get the information you need on which to base your decisions that match your values, beliefs and personal goals.

Please refer to my free downloadable article “The Missing Piece in End of Life Decision-making” and the lists of questions to ask both your physician and your family to help you navigate this journey.  This site also contains other resources that may be of benefit.

www.pathwayseol.com

Death and Dying

Whether to educate and support your own staff, your community, special group, or a combination, I try to make it as easy as possible.

Choosing from a variety of topics, designed to promote knowledge, comfort, and affirmation in a meaningful way, to become effective and compassionate guides for those facing the end of life. It’s a journey we are on together, all of us impacted, all of us learning together.