A Celebration of Life

It’s not about dying; it’s about living well before you die.

You may have heard the story about the little boy who is asked to give his blood to his sister to save her life.  He agrees, and after the transfusion begins he asks, “How long until I die?”  I cry every time I read that story! Poor thing thought a blood transfusion meant he would die so his sister would live – how heroic of him and what an inspiring story!

Like the little boy, many patients referred to hospice don’t understand how it works…this whole end of life care thing.  Many people have never lost someone close due to terminal illness or have any experience with hospice care.  A few have never been to a funeral.

The inpatient hospice unit saw most of their admissions from home patients already enrolled to the hospice program who had a change in condition such as uncontrolled pain or seizures. Or, the admission was from the hospital and the patient was actively dying.  The term “actively dying”, to me, means there’s no coming back. The person usually passes within hours or days, maybe a few weeks at the most. The patient might be comatose or alert, flaccid or combative, but there will be changes in breathing, blood pressure, temperature, and fluid shifts.  Actively dying.

When I began visiting hospice patients at home, there were many things to learn about the types of patients I saw.  First, the patient and family at times had no idea what hospice meant. They did not know it was end of life care, or that they were facing the end of their life. Some still had jobs and planned to continue working, and sometimes I had to start the admission process by reviewing what it is they actually knew about their diagnosis.  I believe the total oblivion of a terminal illness is, in part, denial.  These people are grieving an anticipated loss of life, and Kubler-Ross writes the first stage of grief is denial. The home hospice admissions sometimes start with a review of treatment for the diagnosis, this way the patient can understand why he or she has been referred for hospice care.

Then there are the other patients.  The ones like the little boy, expecting death to happen because of one event like a transfusion.  Completely accepting his fate without fear or regret, peacefully waiting to ‘feel’ a change.   Some hospice patients are accepting of a terminal diagnosis in this way.  There has been so much in the news about assisted suicide, it’s no wonder a lot of folks are confused about how things work in hospice and end of life care. One couple showed me just how confusing.

The patient, let’s call him Mr. Sanchez, was an immigrant from South America.  He’d been in the U.S. since he served in the Vietnam war with the U.S. Army, married, raised a family, and ran a successful business. He and his wife lived in an upscale retirement community, and they hired a private caregiver to assist with his needs.  So, there he was, sitting on the couch asking all the appropriate questions about hospice, like who pays for it, will it hurt when he dies, and what happens with his body afterward.

“Okay, I think I understand.  So, when do you give me the little black pill?”

“Little black pill?”  I was just beginning to review his medications, but didn’t see any black pills.

“Yeah, the pill.  Isn’t that how this works?” He was dead serious. Literally. “I take the pill and I go lay down…”. I was dumbfounded.  He thought I’d brought a death cocktail.

“Sweetie,” his wife intervened, “there is no pill.  She brought medicines to keep you comfortable.”

Indeed, I had brought a Comfort Kit from the pharmacy.  This Comfort Kit is standard for all hospice admissions in most countries where hospice programs exist.  The box goes in the refrigerator, a place that all homes would normally have available, and contains Morphine, Ativan, Haldol, Atropine, and Phenergan.  Some hospices add Senna tablets or Dulcolax suppositories, and if the patient has allergies then substitutions are provided. But there is NO black pill.  No death cocktail.  The box contains nothing intended to do anything buy alleviate symptoms.

Mr. Sanchez was not a well educated man, but he was sharp and affluent in business and dealings of the world.  I was flabbergasted.  Fortunately, the hospice social worker was with me for this admission.  This is one of the best things about working in hospice – it’s a team effort.  Hospice provides complete care at the end of life, and it’s just not feasible for one professional to adequately care for all the emotional support and education the family will need.  It takes a team of professionals.

When Mr. Sanchez asked about the little black pill, the social worker moved to sit closer to him while I picked up his box of medications and moved to the kitchen with Mrs. Sanchez.  This gave me the opportunity to explain the Comfort Kit and review all his other medication while the social worker talked more to Mr. Sanchez about his acceptance of the hospice program.  They discussed the hospice philosophy, and how hospice focuses on living more than dying.  The ultimate goal is for a peaceful death, and for that to happen a person must be at peace with dying.  There is no one way to accomplish this, but sometimes a life review helps.  It could be looking at old photos, reconnecting with loved ones, or checking off a bucket list item or two.  Facing death is what allows a person to live well during the end of their life.  It is about the quality of life remaining, not as much about the quantity of time left.

All worked out well for this family; it was a good death.  Mr. Sanchez invited his friends and family to a celebration of life, something like a wake before anyone dies.  The family held a small, private service after his death, but for two days friends and family stopped by for an open house.  There was food on the table all day and night, lots of reunions, hugs, tears, laughs and expressions of love passed around.  He was alert and looking good.  He had a beautiful life review by looking at old photos, talking with loved ones, and realizing he had lived life to the fullest.  Some visitors that weekend said they were baffled about the get-together, just as he was about hospice philosophy in the beginning. It’s not about dying, he told them, it’s about living well before you die.  Well done, Mr. Sanchez, well done.

 

Photo credit from Pinterest via jacony.tumblr.com.

Medical Marijuana

This is a controversial subject, so please keep an open mind as you read.

Disclosure: I do not use marijuana. I smoked a little in high school and during college, but like a lot of things I did when I was young, I out grew it. Getting high is not fun to me. I do not like the way drugs or alcohol make me feel and I do not condone recreational use of any drug.

Another Disclosure: I have worked with patients who used medicinal marijuana, legally prescribed and obtained in the state of California or Oregon. I support the legalization for medicinal purposes only – not recreational. Please, if this treatment is desired, do so legally and let your doctors know. This is a drug, and it may react with other medications.

Okay, now with that out of the way, I hope you understand I would not publicly support the use of medicinal marijuana unless I knew it would benefit my patients, other patients, and babies. Yes, babies, adults, senior citizens. Terminal conditions, chronic conditions, and temporary conditions. It is not for everyone, and does not treat all conditions. I am most familiar with cancers, seizures, nausea, anxiety, and pain.

Kentucky Senator Morgan McGarvey filed a bill in the 2017 legislative session, and he recently spoke in front of the Interim Joint Committee on Health and Welfare and Family Services. If passed, medicinal marijuana will be available through physician recommendations and only for extreme end of life cases. Some believe the bill is too restrictive and the much needed drug should be more accessible for chronic conditions and for those going through cancer treatment, not just at the end of life. Any legislation is better than no legislation, I believe, because it initiates discussions about the therapeutic effects of cannabis. It would also prevent the arrest of dying patients who buy weed from the neighbor’s kids so he can eat a meal without vomiting.

Cannabis plants have over 300 identified cannabinoids. Hemp cannabis contains very few cannabinoids and those that are present have nearly no medicinal properties. Medicinal marijuana comes mainly from two types of cannabis plants: sativa and indica. Each strain, or unique breed, has a different ratio of cannabinoids (see links below for more information). I can attest that patients do benefit from use of THC, CBD, CBC, or a hybrid, but the CBD oils and tinctures do not have the “high” that most people associate with marijuana as that comes from the THC.  Clinical trials support the use of CBD oil to control seizures in children and adults.

I will not disclose the identity of any patients, but here are some of my experiences of those using medicinal marijuana:

A 92 year old female, stomach cancer spread to bones in hospice. She couldn’t tolerate narcotics, so she smoked a joint every morning and ate a brownie at night.

A 75 year old woman with colon cancer in hospice developed severe abdominal pain with intractable vomiting and pharmacy prescriptions didn’t work.  The family begged for another option. I said I’d call the doctor for a recommendation, but they had their own plan. I never asked where they got it but within 24 hours her pain and vomiting was gone. She was sitting up eating tapioca pudding, smile on her face.

A 50-something year old man, had never used marijuana until diagnosed with brain cancer. Used it to control seizures by inhaling nebulizer tincture of CBD. He was a physicist, and felt the CBD kept his mind more clear than narcotics.

A very ill 6 year old boy, on hospice due to a genetic disorder that caused multiple seizures daily, as many as 200 a day…nearly constant seizures. He took multiple medications, all given through a tube in his belly. The family moved from their life-long home to a state with legalized CBD oil and a clinical trial.  A month later, he talked for the first time and started eating real food. Three months later, he discharged from hospice and the feeding tube removed. Six months later, he went to school for the first time. Today he takes CBD oil three times a day and just a couple other medications. Best happy ending I’ve seen.

 

Check out these links:

Senator pushes to legalize medical marijuana in Kentucky
http://www.wlky.com/article/senator-pushes-to-legalize-medical-marijuana-in-kentucky/10203686

THC, THCA, CBD, CBC, CBN: Medical Marijuana Composition, The Chemicals in Cannabis
https://unitedpatientsgroup.com/blog/2014/04/11/thc-thca-cbd-cbn-the-chemicals-in-cannabis

The ‘nuns’ that grow medical marijuana
http://www.cnn.com/2016/04/07/health/cnnphotos-marijuana-nuns-sisters-of-the-valley/index.html

Why I changed my mind about medicinal cannabis | Hugh Hempel | TEDxUniversityofNevada

Cannabis oil treatments are helping children with seizures

Marijuana saves father’s son

 

The Inpatient Hospice

Hospice works to provide caring, compassionate care while death occurs naturally.

There are many patients who I will never forget.  Some died in my arms.  Some had amazing families.  Some lived in abusive conditions, extravagant homes, or on the streets.  What I’ve learned in my adventures is that everyone has a story, and I am honored and humbled to be a part of and to witness a few moments at the end of their story.

One of the first nights I worked at the inpatient unit I admitted a young man.  He was in his twenties, over 400 pounds, and trached (this is when a tube is placed through the throat in order for you to breathe, sometimes with a ventilator).  The ambulance bought him in after his family called; they could not care for him and they wanted him transferred out of their home right away.  He was dying.

Hospice transfers patients from home to the inpatient unit during periods of crisis, uncontrolled pain, new onset of seizures, or other medical reasons.  Transfers were not uncommon, even during night shift. It was the middle of the night and he arrived alone, no one but uniformed paramedics accompanied him.  This was a young man who required a lot of help – he couldn’t move himself, clean himself, or communicate easily.  He was alert; he was having difficulty breathing, and he seemed to be in pain.  Did I mention he was actively dying?

I assured him I would do everything to help get him comfortable.  He tried so hard to say something to me, but the tube in his throat that kept him breathing also prevented his vocal cords from working.  I got closer, listened as best I could, and was shocked.  “Kill me,” whispered through his trach.  I pulled back with wide eyes, not sure if I’d heard correctly.  That’s not how hospice works!  Hospice provides caring, compassionate care while death occurs naturally, but we do not euthanize patients.  He grabbed my wrist, using every bit of energy to repeat “kill me, please.”  It was clear that time, said with his pleading eyes and his trembling body.

His breathing was labored and he grimaced when moved, so I said “I’ll get you some pain medication.”  His eyes squeezed shut, tears rolling to his side.  He was in pain and I could treat that, but I couldn’t kill him… that’s not what hospice does!  But he was saying it, no doubt in my mind.  It seemed he’d been through so much and a young man in his condition was not what someone would think of as dignified.  He was in pain, so the Dilaudid and Ativan I gave helped him relax.  I was still at a loss.

Thank goodness the other nurses on duty where experienced and I asked them to take a look, curious to see what they thought.  “He’s still in pain,” the charge nurse said, “give him another dose of Dilaudid with Ativan.”  I gave the maximum the doctor ordered three more times before my shift ended.  The next night I worked, he was gone.  No one mentioned him, but I had to ask.

“The doctor came in and increased his medications.  He died peaceful around noon.”  The nurse told me she was with him when he took his last breath.  No family came; no one at their home even pick up the phone when she called so a message was left that his remains were sent to the mortuary.  They still hadn’t called back when I arrived that night.

I was appalled at how the family treated this young man during his last days.  Thank God they had the decency to send him to hospice and allow the loving, compassionate nurses there to take care of him.  No one should be in pain – physical, emotional, or spiritual.  The hospice nurses, including myself, made sure this young man was cared for, comfortable, and died with as much dignity as possible.

The Big Question

Having been raised in a Catholic home, I was taught that Saint Peter would be waiting at the Pearly Gates with a large book containing the names of every human being, and if you had been a good person he would grant entrance to heaven. Otherwise, you would descend into hell. As a child, there were many times I worried that the keeper of the keys to heaven would see my name on the naughty list. I spent a lot of time in the confessional.

As I matured and became educated in science, logic, and reason I fell away from my Catholic beliefs; religion to me was seen as a means for authorities to control the masses, and history of the Christian Church confirmed my beliefs with facts and historical evidence. Even now I see many outdate parables in the bible involving selling children and stoning sinners, things that would put a person in prison a very long time today. I’ve drifted from Catholicism and into other religions and eventually decided we all are worshipping the same energy. There is only one God, one Source, one Divine presence. And the Big Question – is heaven real? Yes, heaven is real.

My first experience in hospice was as a volunteer at the hospice inpatient unit. I wasn’t yet sure about a career change, so exposure to hospice patients seemed like a logical yet noncommittal step in that direction. The first assignment was to sit with an elderly woman until her family traveled from out of state to be with her. What I witnessed in her room forever changed my way of thinking.

I do not recall her name, but she was from the era of the 1940s because there was a wedding photo of her and her husband next to her bed set in that time period. The nurse told me she has severe dementia and had not spoken a word for years. She was heavily medicated for comfort and unable to move on her own; she had not opened her eyes since they found her on the floor in the nursing home. Technically, she was comatose. It’s likely those in this condition are able to hear, not with their ears but with their spirit, so I talked with this woman while we waited for her family. I told her I was sorry she had fallen and was in a hospice, and because of the religious artifacts in her room I said a few prayers over her. I said that her family was in route to see her and to hold on a while longer so they could see her before she leaves us. For the next couple of hours I made small talk, held her hand, wiped her eyes, and let her rest. She never once moved or made a sound.

It was getting late and I was nodding off in the chair next to her bed. I jumped at the sound of her voice, saying “Bernie…”, and then I saw her hand, her frail, contracted hand, lift up and reach toward the ceiling. I stood up to see her eyes were wide open and she had a peaceful smile across her lips as she repeated, “Bernie…my Bernie.”

“Oh my,” a voice from the hallway startled me. The daughter and son-in-law were at the door, chins dropped, amazed at the sight.

“Is Bernie her husband?” I asked.

“No,” said the woman. “Bernie was my brother. He died last week, that’s why we were out of town. But we didn’t tell Momma. She doesn’t know.”

There is no way to explain for certain how this happened – how her ability to speak, move, and see returned. How she was seeing her recently deceased son in the ceiling tiles. There’s no way to know what she really saw, and why she was calling Bernie’s name. I know what I believe. I was witness to the connection between two souls on different planes of existence. I believe I was witness to the transition between life and death, a holy place where spirit lifts our souls from this world to the next. Something is out there, and loved ones are waiting.