Bone China

pexels-photo-209438.jpegThis story was relayed to me by an acquaintance:

On a bright sunny spring day, Katie watched as her elderly neighbor walked solemnly into her house.  Her neighbor’s husband had been fighting cancer for a couple of years, and his condition had declined greatly over the winter.  Katie suspected the worse.

“Hey, Marge,” she said, tilting her head a little.  “How are things…”  She was hesitant to finish the sentence, hoping it wasn’t bringing up a subject she wasn’t ready to discuss with the neighbors, “you know, with Joe?”

“Oh, he’s doing much better.  He’s going to hospice today.”  She smiled and invited Katie in for tea.  Katie started the kettle while Marge got out her bone china cups and saucers.  They made small talk about the weather and old man Nichol’s with his knee socks, and Katie waited for Marge to give information about Joe.  By the time the kettle blew, Marge had set a beautiful table.  The candles were lit, cloth napkins folded just so, a dish was filled with pecan crisps, and real cream in the pitcher.  Her china set was elegant with dainty flowers and gold trim.  The dining table looked like it was set for royal guests.

“Wow, Marge, this is beautiful,” Katie said.  That is when she noticed Marge’s red-rimmed eyes.  Instinctively, she put her arm around Marge’s shoulders as she sobbed.  Neither said anything – there was no words that could be said at that moment.  Marge lifted her head, sighed deeply, and grabbed a nearby box of tissues.  She was petite and gentle, but was the type of woman to take the bull by the horns when confronted with difficulties.  Except today, and Katie noticed a particular frailty to her she had never seen before.  They sat down and Katie poured the tea.

“You know, Joe and I rarely used our good china.  We saved it for special occasions, and over the years I think maybe three or four times I’ve brought it out.” 

“It’s beautiful, Marge.”

“He’s dying, you know.”  She stirred her tea and took a sip, not looking up from the dishes on the table.  “We’ve just run out of time and now he’s going to hospice.”

Katie was not familiar with hospice, but understood it’s where people go to die.  Marge explained that so many things happened to Joe over the past two weeks, starting with a fall in the bathroom and four stitches on his scalp.  Most recently he had a series of blood clots, and yesterday Joe had a massive stroke.  He was not responsive, unable to eat or drink, and connected to many monitors and tubes.  Today, his oxygen levels dropped and the doctors talked to Marge about intubation, but she said no.  Marge and Joe had living wills made decades ago, and when he was first diagnosed with cancer they had confirmed the choices made.  No feeding tubes, no heroic measures, and if there was no hope for a full recovery, no intubation.  She asked if it was time for hospice, and the doctor made a referral. 

“When we had these living wills made, we said letting go would be the greatest act of love for one another.”  Marge sipped her tea, and setting her shoulders square said, “And I love him to death.”

Katie drove Marge back to the hospice later that day, and Joe passed peacefully a few days later.  It’s been nearly a year since Joe passed and Marge has taken up painting, something she had never tried before.  The women have tea regularly now, usually with cookies or pie, and always on the bone china.   

Having a living will or advance directive is a way to make sure others know what your wishes, should the situation arise where you are unable to speak for yourself.  A living will can be prepared by your attorney, but there are several types of advance directives available online.  For more information about advance directives, please see the links below:









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

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

THC, THCA, CBD, CBC, CBN: Medical Marijuana Composition, The Chemicals in Cannabis

The ‘nuns’ that grow medical marijuana

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.

Why Hospice?

Anne showed me my path in nursing.

I am often asked why I chose to work in hospice and palliative care.  There isn’t one answer to this question other than to say it was a calling. There is such a spiritual side to hospice; it’s so much more than giving IV medications and changing bandages.  I don’t consider myself an expert in end of life care, and I know I’m not the best hospice nurse in the world, but I find caring for those facing the end of their time to be extremely rewarding. I know it’s a totally selfish reason, but the people I have met in this journey have given me purpose, inspiration, insight, love, and hope. I have seen pain and bliss, anxiety and peace, loneliness and friendship. I have seen things that are difficult to explain.

The first time I thought about becoming a hospice nurse did not involve a patient transitioning to hospice.  A recently employed RN coordinator at a skilled nursing facility, I was still adjusting to the change from acute care on a busy post-surgical unit to long-term care.  My office was across the hall from assisted living rooms where the frail, elderly residents sat at their doors waiting for someone – anyone – to visit.

I realized that many of the wonderful residents of this facility did not have family nearby, including a lovely 99 year old lady who we’ll call Anne. Born in England in 1896, the 75 years living in the U.S. has faded her British accent so just a trace remained.  She was elegant, polite, kind, and amazingly fit for nearly a century of wear and tear.  We started with simple greetings in the hallway, then like a moth I was drawn to the light in her gentle soul and started visiting her as much as possible.  At times we would eat lunch together in her room or I’d bring her homemade cookies. We became close, maybe because my grandmother passed the year before, maybe because we were kindred spirits.

Anne may have been the most independent resident in the assisted living rooms.  The nursing home was square with a courtyard in the middle, and I remember she walked the inside circle after every meal, pushing that walker with the pink basket as fast as she could go.  I was not aware at the time, but now I recognize much of her routine is common among centenarians. She ate mostly vegetables; she always had an afternoon nap and went to bed early.  She maintained friendships with many other residents and staff, and she always saw the glass half full.  Anne was always a positive ray of sunshine in the dismal surroundings of a nursing home.

As her 100th birthday approached, her family contacted the facility to arrange a space for a celebration. Family came from New York, Tennessee, Colorado, and Hawaii where she spent most of her married life as a Navy wife.  She moved to the mainland when her husband retired, and she joked that most people in Indiana want to retire in Hawaii yet she did the opposite and ended up in Indiana. Her husband died decades before and was buried in Indianapolis next to their oldest son; she remained there because it had become her home.  To her five children, 17 grandchildren, and many great-grandchildren, Indiana had become the central meeting point for family reunions, including her 100th birthday party.

I remember family showed up a week before the celebration, trickling in for visits as they arrived.  Anne was the happiest I’d ever seen her.  No more waiting at the door for visitors – they waited at her door to have one-on-one time with this amazing family matriarch.  She pulled volumes of photo albums from the top of her closet and went through photos from England, Italy, Hawaii, and from every vacation she had taken with her husband.  She reminisced with family right up to the afternoon she blew out 100 candles (she had a little help).  After the cake was devoured and the guest had left, Anne went to her room to eat her dinner like it was any other day.  I stopped by before going home to see how she was doing.

“I’ve had the best time today.” She remarked. “Seeing my family together again warms my heart.”

“That’s great, Anne,” I replied.  “You will have so many new pictures that you’ll need another album.  You can share them with your family next year on your 101st birthday.”

“Oh no,” she said matter-of-factly.  “That will be the last time my family gets together like we did today.”

“I will have the film developed when I go to the store tonight.  They have a instant photo booth.”  I planned to surprise her with a new photo album.

“I have lived 100 years and I think that is enough for me.  I’m ready to go home now.  I’m ready to be with the Lord.”  She seemed at peace, staring into the distance. I didn’t think much of that comment because most older people talk like their next birthday isn’t a given, and I suppose it isn’t for any of us.  Besides, she was exhausted.  She might have been spry for 100 years old, but she missed her nap and all the visitors during the week had been a little overwhelming at times.

“You get some rest tonight.”  That’s all I said before I left.

The next morning I noticed she wasn’t in her room watching the national news headlines during breakfast, which was part of her daily routine. I stepped in and saw her bed was not made and her dentures were still in the cup on her night stand.  I immediately checked with the nurse’s station to see what was going on.

“I don’t know, she just died,” the night nurse said as she was leaving.  “She was fine at 4:00 a.m. bed checks, then at 6:00 o’clock she was gone. Died peacefully in her sleep.”

“She went as gracefully as I’ve ever seen anyone die,” commented another nurse.

“That’s crazy!”  It’s all I could think, because it was absolutely bonkers that this perfectly healthy woman died on her 100th birthday, or technically the day after. Sure, she was a centenarian, but there were no medical issues that would have caused her to die suddenly.

“Oh Sweetie,” the older nurse commented. “After you’ve been around a while, you will see a lot of crazy things.”

Looking back I believe Anne had simply decided to die.  I can’t explain how someone could do that – to control their body or have it cooperate with their decision, but I certainly understand why Anne would have if she could have.  She told me herself she was ready to go.  I heard her but I did not listen, something I vowed to change going forward.

This is when I realized the magnitude of the nurse’s presence with those facing end of life.  I was one of the last people to speak with Anne.  I also witnessed how death can be a moving, miraculous event. Most of Anne’s family was still in town, and those who could, stayed for the service. Those who had to leave were grateful they had the chance to see her once more. What an honor to have known her, to spend time with her in her final days. It was Anne who showed me how natural and beautiful the end of a life can be, and it was Anne who inspired me to walk the path to hospice nursing.