Knowledge is Power - Understanding Your Options

One of my greatest pleasures in life is speaking about hospice and palliative medicine.  It doesn't matter if it's to an audience of 1 or an audience of 1,000.  If given the opportunity, I will gladly share my passion with anyone willing to listen (and often to many who are not keen on listening).

What's funny to me - not funny "ha ha" but funny "peculiar" - is that when I am asked to give a presentation on hospice and palliative medicine, the program coordinators almost always ask me to "focus on the positive" or "keep it upbeat" or, even better, "try not to focus on death and dying".  One time I even had someone tell me, "This group really likes to laugh" and then scheduled a magician to go on after me.  I mean, really?  How in the heck am I going to talk about hospice and palliative medicine without talking about dying?  And, while I am always upbeat and positive about death and dying, this in an of itself is peculiar to people.  What can I say?  I have an affinity for end-of-life care.  In fact, I think it is by far the most exciting topic on the planet.  

Today, however, I signed up for a challenging task.  I am to give an hour and a half interactive lecture to a group of cancer survivors about hospice and palliative medicine and I'm asked to title it something that would actually draw in a crowd.  It's a daunting task to say the least and a potential buzz kill for a cancer survivor.  BUT I know I can do this and I WILL do it.  I've never been one to back down from a challenge.

So, I came up with: 

"Knowledge is Power - Understanding Your Options" 

Speaker: 

Lisa Marie DiLuigi, RN BSN CHPN

Director of Hospice

Legacy Hospice of the Piedmont

A Danville Regional Medical Center Affiliate  

The bottom line is no one wants to talk about death and dying despite the fact that there is a 100% chance that one day we all will die.  How do you plan for death without talking about it?  Therein lies the challenge.  I mean, if you don't put some planning and forethought into it you can be guaranteed it's not going to be a momentous occasion - at least not in the positive sense.  

I commonly ask people to describe to me the best party they ever attended.  They go on and on about the food, the decorations, the music, the toasts, the company, the outfits, etc., etc., etc.  Then I ask them how much planning they think went into making that party such a huge success?  I follow that by posing the question: "If you knew that you only had 6 months left to leave and that aggressive treatment could not extend your prognosis without greatly affecting your quality of life, how would you want to spend that time?"  

Most answer that they would want to be surrounded by family and friends.  They would want to be at home.  They would want to be comfortable.  They may want to take a trip to their favorite vacation spot, go fishing, visit their grandchildren, or have meals with their favorite people.  Perhaps there were relationships that needed mending, spiritual struggles that needed to be resolved, or financial matters to address.  ALL of these things take preparation and planning.  

When we come to that time in our lives when cure is no longer an option we have to have a plan.  Well executed plans lead to satisfactory outcomes.  I want everyone to have a good death.  I want every family and caregiver to have the opportunity to embrace the dying process and to experience the joy of celebrating the lives of those we love.

One of the most beautiful deaths I have ever encountered was the death of my grandmother, Dorothy DiLuigi.  She was diagnosed with cancer around age 85 and chose not to pursue curative treatment because she knew that she was too advanced in age to withstand chemotherapy and radiation therapies.  She, instead, opted for the palliative care route.  In the month of April she was admitted to home hospice services.  She spoke to all of us about her wishes, she had an advanced directive, and she was very clear that she did not want anything aggressive done to prolong her life.  She wanted to live the remainder of her life with the highest possible quality for as long as she had left to live.  For her, that meant visiting with her children, grandchildren and great-grandchildren.  It meant eating chocolate and watching movies, visiting with long time friends, and crocheting for the "elderly".  She wanted to give away her things to the people she loved and see the looks on their faces when they received family heirlooms that would keep her memory alive for years to come.  She wrote us letters and told us daily how much she loved us and to "talk to me when I'm gone, I'll be listening".  She received the Anointing of the Sick when she became bedbound and unable to eat or drink.  She had family gathered all around her.  We prayed, we laughed, we cried, and we said goodbye with our words, our tears, and our touches.  Some of her last words were, " 'Love', it's the biggest word there is."  She died in September at home, surrounded by those who loved her, in peace and comfort.  It was sad and I miss her every day, but it was the most beautiful death I have ever experienced.  

I can't help but want the beauty of that experience to be had by others.  So, even if I was not placed here on this earth to talk about a topic that is socially acceptable, I pray that I will be fortunate enough to have my words influence and positively affect the lives of others.

Easter Sunday

Happy Easter everyone!  It was a wonderful day, absolutely gorgeous and sunny in southern VA.  The day started out with a beautiful Easter service at Osborne in Eden, NC followed by a delicious breakfast with family.

Around 12 noon the phone rang and it was a hospice emergency.  Can I find a Catholic priest to go to the hospital on Easter Sunday to perform the Anointing of the Sick?  Hmmmmm....it was a mission, but I was up for the challenge.

First, I called the church.  No answer.  Then I called the rectory.  No answer.  I kept calling for about 30-45 minutes.  I discovered that there was a service at 11:30am and I figured it would be over by about 12:30pm and perhaps I'd ben lucky enough to catch the priest before he headed out for Easter dinners with his parishioners.  I was getting nervous.

I grabbed my Bible and headed out to the hospital.  If worse came to worse, I would pray for God to work through me.  I wasn't going to actually pretend to be a priest or pull Olive Oil out of my pantry and pretend like it was anointed, but I was armed with the proper prayers and was willing to speak them to the best of my ability.

As I was driving to the hospital I went by the Catholic church and noticed that the 11:30 mass was letting out.  Praise God for long Easter services!!!!!  I whipped a U-ey and pulled into the nearest spot, hopped out of the car and pushed my way through the crowds piling out of Sacred Heart.

There was a line of parishioners waiting to greet the priest and wish him a happy Easter.  I thought for a minute that actually getting in the line and asking this priest who had never met me and perhaps never met the dying woman at the hospital, might put him in a position that he couldn't say no.  PERFECT!!

I slipped into the line and waited my turn.  "Hello, Father.  My name is Lisa Marie, I'm a hospice nurse. There is a woman in the hospital, just a few blocks away.  She's dying, Father.  She needs the Anointing of the Sick.  Will you please come with me?"

"Of course.  What is her name and what room is she in?" the priest answered.

Score!!!!!!!  Approximately 15 minutes later he met me at in the patients room and granted this dying woman's wish, to be absolved of her sins, receive Holy Communion, and her Last Rites.

Easter does not get any better than that.  Jesus Christ is risen today!

Jesus Loves Me

If I had a nickel for every time someone said to me, "I don't know how you do what you do" I would be a very wealthy woman.  I promise you, the rewards for working in hospice are bountiful.  It is an enormous blessing and the stories we have to tell can move even those with hearts of stone.  For example:

I was working in hospice only about 6 months when I was first shook to my core.  My job was as an admission nurse.  I performed 2 admissions a day which allowed me the opportunity to meet a number of families and learn about the various types of disease processes that would lead someone to hospice.  A big part of my job was orienting patients and families to hospice and setting them up with our agency.

This day in particular, I was admitting a patient with end stage dementia.  Patients who fit hospice criteria for end stage dementia are generally bed bound, require 100% assistance with their activities of daily living (feeding, bathing, dressing, toiletting, etc.), and often have little to no ability to have any meaningful communication.  The patient I was admitting, in this instance, had not spoken in months.  He had no idea who any of his family were, although he was very comfortable with his primary care person who was his niece.

Patients with dementia need and respond positively to routine.  When you change their routine by introducing new people, moving them to a new location, etc. this upsets them tremendously.  Admitting a patient to hospice who has dementia can be a challenging transition for them and we do everything we can to make this as comfortable an experience as possible.

I asked the patients caregiver to give me some personal information about him so that I could find something that he would respond to positively.  She told me that he had been a music minister.  She said that he was extremely involved in his church and that she would often play music for him as a means of easing his anxiety.  Perfect!  I told the caregiver that I enjoyed music as well and asked if it would be okay if I sang him a song before I started my assessment.  She agreed.

I went over to my patients bedside and I sat down in a chair next to him.  He looked at me with these huge eyes that couldn't possibly open any wider.  He was completely thrown off by my presence.  I told him my name and that I was a nurse and that I was there to help him feel better.  I told him I had heard that he loved music and ministered to people through song.  He continued to stare at me.  Reaching out to hold his hand, I told him I too loved music and wanted to sing him a song.  Then I took a deep breath and began to sing:

Jesus love me this I know

for the Bible tells me so

little ones to Him belong

they are weak but He is strong

I noticed that as I was singing his lips began to quiver a bit.  Don't forget, this gentleman had not spoken in months.  But to my amazement as I continued:

Yes, Jesus loves me

He started singing!!  He pushed through like someone trying to speak who has junk stuck in their throat (which he probably did from not speaking for so long) but he got the words out and sang with me:

Yes, Jesus loves me

Yes, Jesus love me

the Bible tells me so

The family was in tears and I was in tears, but this man was singing!  He kept singing the chorus over and over and over again.  He let me take his blood pressure, listen to his heart and his lungs, although it was hard to get a clear assessment because all I could hear was his singing, but it was awesome!  He sang Jesus Loves Me until I left the house and who knows how long until he stopped.

That day will be in my heart for as long as I live.  It's not only because it was so amazing to witness such a miracle but because it reminds me of how precious life is and what a difference serving, as Jesus intended us to, can make in a persons life.  

I challenge all of you to make a difference in someone's life by taking the time to serve them.  There are so many ways we can just be there for people.  The Bible says: 

As each has received a gift, use it to serve one another, as good stewards of God's varied grace.

What is your gift?  How can you use it to serve someone today?

A love story

It is an honor and a privilege to serve patients and families facing life-limiting illnesses.  End-of-life experiences are rich in emotion and spirituality.  Serving in this type of environment allows us to be present during a time that is sacred and offers us access to peoples lives at at time of intense vulnerability.  Each story is unique and special.  This is one of my favorites.

When I was very young I had a newspaper route.  I hated it.  Looking back I can see the importance of the lessons learned through this responsibility and I probably even thank my parents for it, however, as a child you rarely see past the end of your nose.  At the time I thought it was cruel and inhumane of my folks to make me get up at 5:00 am, regardless of the weather, stuff newspapers, stack them on to a cart, and wheel them around my entire neighborhood.  Oh, and we didn't throw them on the driveway like they do nowadays.  We walked them up to the door and placed them securely between the storm and front door of each neighbor's home.  Perhaps that's why I am such a stickler for exceptional customer service today.  I digress...

What I did really love about the newspaper route was the "collecting".  At the end of each month we would go door to door and collect money for the papers we delivered.  I enjoyed it because it offered the opportunity to get to know the people that we served.  My older customers would ask me inside and serve up cookies, milk and other treats.  As I would nibble on the tasty (and sometimes not so tasty) snacks, they would tell me stories about their lives, their children, and their grandchildren.

A couple I was particularly fond of was the Carmichael's.  I had to make sure I had plenty of time when I went collecting to their house because I knew I would be there for at least an hour.  The Carmichael's lived on the corner and Mr. & Mrs. Carmichel did everything together.  Mrs. Carmichael didn't drive so Mr. Carmichael took her everywhere she wanted to go.  They didn't have any children but I remember being struck by how in love they seemed to me.  At the time I didn't know a thing about love but it touched me the way he would dote on her.  He would anticipate her needs, tease her and look at her with an affection that I wasn't used to seeing in people that age.  Whatever they had I knew I wanted when I grew up.  Mr. & Mrs. Carmichael became like adopted grandparents.  They came to my Kindergarten play (yes, I delivered newspapers that young!  Thanks, Mom & Dad!) and took me out to lunch afterwards, things like that.

I remember the day that Mrs. Carmichael became very ill.  I don't remember exactly how old I was but I believe I was around 12 years old.  I would go to check on Mr. Carmichael when he would come home from the hospital.  He could barely look at me and would tell me he "couldn't talk right now" and I could tell he had been crying.  Mrs. Carmichael died shortly thereafter and when she died it took all of the life out of her husband.  He would barely come out of the house.  His car would be parked out front for days.  In no time, I got the news that Mr. Carmichael had died too.  To this day I believe he died of a broken heart.  In fact, I know it to be so.

A love like that is rare.  Still, I have had the honor to witness several stories like that of the Carmichaels' and I think of them each time.  There is something so moving to see older couples holding hands, kissing, hugging and smiling at each other.  It makes you wonder about all that they have been through and how true a commitment it is to stay married for so many years and be that happy and in love.  Call me crazy, but to love someone so much that you physically, emotionally and spiritually lose the will to live without them is incredibly romantic.

Just thought I'd share.

Departures

My Godmother, aka "Apple Suzie" recommended I watch a Japanese movie called Departures.  It came in the mail today via Netflix.   I have to say it was the absolute best movie movie I have seen in forever.  Beautiful music, excellent acting, and my favorite subject matter - death.  I keep trying to tell people that there is so much beauty in death and now there is a movie to prove it.  So, go out and rent this movie, you will be deeply moved.

There were two things that struck me to my core in watching this film.  First was an old man who had been working at a crematory all his life.  He told a man who was there saying goodbye to his mother who was about to be cremated that he liked to think of his job as a "gatekeeper".  He felt like he was escorting the dead by opening up the gate from this life into the next.  I thought that was incredible.

Whether you work in death and dying or not, as we get older the number of people we have seen go through the dying processes grows.  For most people I would say the experience is something they didn't look forward to nor would they want to go back and do it again.  But I love the idea of the "gatekeeper" and it struck a chord with me because hospice staff are absolutely helping families escort their loved ones through the gate from this life into the next.  Our hope is to provide a dignified and graceful entrance through that gate.  Wouldn't it be wonderful if we could all see it that way?

The second thing I loved the most about this movie was identifying with the main character.  He was a cellist and his orchestra was dissolved.  He didn't feel like he was a very good player and he and his wife moved back to his home town where he "by fate" found a job posted in the newspaper that, unbeknownst to him, turned out to be a position as one who prepares dead bodies for placement in a casket.  These professionals go to where the person has died and provide post mortem care, however, it is done in this incredible ceremonious way and includes bathing and makeup and dressing.  He has no idea and is shocked when he hears about what he is applying for but the owner convinces him it's his fate.  Turns out that he falls in love with the profession and is really good at it.  When his estranged father dies, he is summoned by the authorities to his death and performs the ceremony for his father.  It's this amazing moment of grief and bereavement, words cannot express how moving.

I identify with this not only from my background as a musician, but also because I never would have expected that death and dying would be my thing.  I believe that God moved me toward it so that I could be there for my family when my Mom-mom died particularly but then also for the loss and illnesses of our other family and loved ones.

It's incredibly late and I'm sleepy but I just had to share about this film.  Please, please, please go out and rent it.  You will be moved, you will be entertained, and you will be convinced of the beauty in death.

Victory!!!

It's always important to celebrate the victories, even the small ones.  Today I am celebrating!  You see, I'm the new kid on the block, in a very small town.  Outsiders are not always welcome.  But I am also, as people may describe me, "tenacious as a bulldog".  I refuse to give up, especially when it comes to things I value - LOVE, LIFE, & HOSPICE.

Today I hit a milestone with a hospitalist.  A hospitalist is a physician that works in a hospital setting, taking care of patients who are admitted to the hospital, and overseeing their care during their stay. Our hospice agency receives referrals from these physicians when they plan for patient discharge.  If a patient is eligible for hospice services our hope is that they will be referred to us so that we can help the patients and families safely transition from the hospital to home with hospice.  It takes time to develop relationships and trust with these physicians.  They are extremely busy and I, after all, am not a peer.

I have been working hard to educate these hospitalists on hospice services, eligibility, and the proper time to refer.  I have also been working diligently to get them to utilize my experience and training in end-of-life care.

Today I was working with a patient and family who were planning for discharge and I had a recommendation that I felt strongly needed consideration to afford a safe and comfortable transfer. I called the physician to offer this recommendation and was initially met with resistance.  Instead of giving up, I went to find the hospitalist to make my case.  He wasn't completely thrilled, BUT, he took my recommendation and agreed to it.  HALLELUJAH!

It takes time and patience to earn the respect of anyone.  When you are in a position of lower authority it takes even longer.  But if you truly believe in  yourself and you hold true to your values and fight for what you believe in, it will pay off in the end.  It may take longer than you anticipated and you will hit many a brick wall.  I encourage you to chip away at that wall one piece at a time and soon you will remove enough bricks that you can crawl through and reach what you so longed for on the other side.

What is hospice?

I love to talk about hospice.  In particular, I want everyone to know about hospice.  There are many myths floating around, many misconceptions so to speak.  I'll do another blog about those myths in the future but first I want to give everyone a basic understanding about the hospice benefit.

Who pays for hospice?

When I give informational visits to patients and families considering hospice services the very first thing I want them to know is that Medicare and Medicaid cover hospice services 100%.  Most private insurances also provide a hospice benefit.  Reputable hospice agencies verify insurance benefits before admitting patients to hospice so that patients and families will know their exact coverage and any out-of-pocket expenses, if any, they can expect.  There are also many non-profit hospice agencies out there that will not refuse services to anyone eligible for hospice, regardless of their ability to pay.  SO, if hospice is right for you or your loved one, please do not hesitate to consider hospice solely based on the fear that you cannot afford it.  

Who is eligible for hospice?

Patients eligible for hospice have a life expectancy of 6 months or less if the disease runs its natural course and are focused on quality of life, or comfort, vs. curative treatment.

What is covered under the hospice benefit?

Hospice is an interdisciplinary approach to care.  Hospice manages the physical, social, psychosocial, and spiritual needs of patients and families.  The patient and family together are considered the unit of care.  The interdisciplinary team, therefore, consists of: the patient, family, caregivers, nurses, social workers, hospice aides, chaplains, and physicians.  The number of visits the various team members make to patients and families on a weekly basis are not limited.  They are based on the specific needs of patients and families.  Hospice also provides medications, supplies, and medical equipment related to the hospice diagnosis.  Bereavement services and volunteers services are also an important part of the care we provide.  Oh, and did I mention the education component?  So many families are willing and able to care for their loved ones but they are uncomfortable because they are uncertain what to do and how to do it.  Hospice provides the guidance and education needed so that families can do what they want to do - care for the person they love.  Hospice nurses are on call 24/7 to assist patients and their caregivers.  Hospice medical directors can also make house calls on an as needed basis.  All of this is coordinated by hospice and covered under your hospice benefit!!  Is that not awesome???

Where is hospice care provided?

Patients can receive hospice care in their private residences, nursing homes, independent living facilities, assisted living facilities and, in some cases, residential hospice facilities.  There are different levels of hospice care.  The majority of hospice care is provided where the patient lives, however, some patients require short term inpatient care at a hospice inpatient facility or contracted hospital for acute symptom management needs or for respite care related to caregiver breakdown.

What happens when my loved one dies?

One of my favorite parts of hospice care is being there for families when the patient dies.  Without hospice this can be a really unnerving experience.  With hospice, fears are calmed.  When a patient who has hospice services dies, the family or caregiver calls hospice any time of day or night and a nurse comes out to the place of residence and pronounces death.  The nurse then provides postmortem care, calls the funeral home of the family's choice and waits with the family for the body to be received.  Hospice remains with the family to comfort them.  No whistles or sirens or police or fire engines necessary, just peace and comfort.

So, that's just the nuts and bolts.  Thought it made sense to lay out the basics for anyone who may never have experienced hospice in the past.  Many people have never had a family member or friend who has had hospice.  The above is the very least you can expect.  There is so much more!!!

If anyone has any specific questions or topics they'd like for me to talk about I'd be MORE than happy to oblige.

More to follow.....

Death & dying

Let's just get those words out there - death and dying.  That's what I'm here to talk about.  Perhaps if they are used enough it will help to desensitize them.  If I could have any supernatural power it would be that I could magically change the feelings that are evoked when these words are spoken.  I wish planning for death and dying would spark the same interest as planning for a wedding or a shower for a new born baby.  Honestly though, I get that this expectation may be unrealistic and that "Rome wasn't built in a day".  Still, I feel like my purpose in this life, my vocation, is not only to care for dying patients and their families but to change the perceptions our country has on death and dying.

I am here to tell you that we only have one life to live, therefore, only one opportunity to die.  There is so much beauty in the dying processes.  Imagine what it would be like if you spent the same amount of time planning for your death as you did planning for your wedding.  Think of all the places you would go, the people you would see, the things you would say, and the joy you would experience.

What I don't understand is that everyone knows that we are going to die one day.  This is not secret. Talking about death and dying doesn't make it come any sooner.  It simply affects the manner in which we do.  I don't know about you but, if given the opportunity, I want to have an amazing death.  I want to be surrounded by friends and family. I want quality of life to always be my focus.  If I am faced with a life limiting illness and treatment can no longer offer cure, I don't want to waste time on measures that prolong life but sacrifice quality. I want the opportunity to review my life accomplishments, prepare my mind, body and spirit for life eternal, and celebrate the life that God blessed me with here on earth.  I want to lay on the beach and feel the sun on my face.  I want to snuggle with my dogs and make love to my husband. I want to eat my favorite foods, drink wine, and laugh out loud. I want to tell my friends and family that I love them over and over and over again.

I challenge anyone reading this blog to consider what you would do if you were faced with a life limiting illness that was not curable.  How would you want to live the rest of your life? What does quality of life mean to you? With whom have you shared the answers to these questions?