Choosing a Hospice: 16 Questions to Ask

Good information provided by the American Hospice Foundation…Crape Myrtle flowers on campus July2,2012 006

Hospice is a set of services that we all may need someday – if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.

How do you find the most appropriate hospice? Until hospice quality data is readily and easily available to all of us, the experts at American Hospice Foundation have pulled together some tips for choosing the most appropriate hospice. Answers to these questions will give you clues about quality of care and help you make an informed assessment.

What do others say about this hospice? Get references both from people you know and from people in the field – e.g., local hospitals, nursing homes, clinicians. Ask anyone that you have connections to if they have had experience with the hospice and what their impressions are. Geriatric care managers can be a particularly good resource, as they often make referrals to hospices and hear from families about the care that was provided. Anecdote and word of mouth won’t paint a full picture but they are still valuable data points.

How long has the hospice been in operation? If it has been around for a while, that’s an indication of stability.

Is the hospice Medicare-certified? Medicare certification is essential if the patient is a Medicare beneficiary to permit reimbursement.

Is the hospice accredited, and if required, state-licensed? Accreditation (JCAHO or CHAP) is not required and not having it doesn’t mean a hospice isn’t good, but if the hospice has it, then you know a third party has looked at the hospice’s operations and determined they come up to a reasonable standard of care.

What is the expectation about the family’s role in caregiving? See if what the hospice expects from family members is consistent with what the family is able to do.

Are there limits on treatment currently being received? Is there anything currently being done for the patient that a hospice under consideration would not be able to do?

Can the hospice meet your specific needs? Mention any concerns the family or patient have about care and ask the hospice staff how they will address those concerns
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Does the hospice offer extra services beyond those required? Some services fall in a gray area. They are not required by Medicare but may be helpful to improve the comfort of a patient. An example is radiation and/or chemotherapy for a cancer patient to reduce the size of a tumor and ameliorate pain. Some hospices would not be able to afford to do this but others with deeper pockets could.

How rapid is crisis response? If the family needs someone to come to the home at 3AM on a Saturday, where would that person come from? What is their average response time?

What are the options for inpatient care? Patients being cared for at home may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities can vary from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. Visit the facilities to ensure that they are conveniently located and that you are comfortable with what they offer.

If the family caregiver gets really exhausted can we get respite care? Caring for someone with a serious illness can be exhausting and, at times, challenging. In addition to home hospice care and inpatient care when symptoms prove unmanageable at home, hospices also offer “respite” care (periodic breaks for the caregiver of up to 5 days during which the patient is moved to an inpatient bed) and “continuous” nursing care at home for brief periods at the patient’s home when family caregivers are unable to manage on their own. Ask the hospice under what conditions the hospice provides these types of care.

Are their MDs/RNs certified in palliative care? Not having it doesn’t mean the staff is not competent as experience counts for a lot but having this credential is an indication of specialized study in palliative medicine/nursing.

How are patient/family concerns handled? Is there a clear process for sharing concerns with appropriate hospice staff and making sure they are addressed, including a process for escalation if the concern is not adequately addressed at lower levels?

How does the hospice measure and track quality? You are not looking for a lot of technical detail, just a response that indicates that the hospice evaluates its own performance in order to improve it.

What are your general impressions at initial contact? What is your reaction to the people you talk to?

What kind of bereavement services does the hospice offer? Types of grief support can vary widely and may include individual counseling, support groups, educational materials and outreach letters.

Choosing a Hospice: 16 Questions to Ask by Naomi Naierman and Marsha Nelson was originally published on the website of the American Hospice Foundation. © American Hospice Foundation. All rights reserved.

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In life…

hospiceA5[1]In life, death is inevitable.  We don’t like the idea.  We don’t want to think about the idea.  We don’t want to accept the idea.  We would rather focus on something else… maybe anything else… something that doesn’t make us feel so helpless an

 

 

 

 

d sad and out of control.  However, sooner or later we come back to it…In life, death is inevitable.

When death or loss occurs, we respond.  We respond in ways that we recognize, and we respond in ways that we may not recognize.  You have probably heard that “no two people grieve the same way” or “there is no right way or wrong way to grieve”.  These are tried and true statements and there is a reason why they are tried and true, it because…well…they are tried and they are true.

You are individual.  You are unique.  You are you, and you will respond

 

to your loss in your own special way.  That being said, as you walk this path of loss, you may find that there are a few common landmarks along the way.

Listed below, in no particular order, is a list of some of the different ways that loss can affect you.  This is NOT a list of requirements in order to grieve “appropriately”.  This is NOT a complete list of the potential ways that loss can touch our lives.  It IS a list that is offered to you in order to broaden your awareness of how impactful death can be.

Responses to Death or loss may include:

 

 

Restlessness, difficulty concentrating, disrupted sleep patterns, frequent dreams of your loved one, loss of interest in social interaction, altered eating habits, loss of interest in personal appearance, denial of the loss, blaming others for the loss, feeling shaky, increased heartbeat, tightness in the chest or throat.

 

You could experience:

Anger, Guilt, Frustration, Anxiety, Confusion, Fear, Despair… Relief, Comfort, Peace, and/or Hope.

 

You might:

Cry unexpectedly, Feel you are burden to others, Find yourself wandering aimlessly around the house, Forgetting to finish things you have started, or that you are simply “Going Crazy”.

The list could continue, but hopefully you are beginning to get the idea.  When it comes to Death and Loss and your response, it can be a multidimensional experience.  The key is it is your experience.  Embrace it, lean into it, and allow yourself the privilege to walk this special pathway you now find yourself walking on.  If the bereavement staff at Hospice of East Texas can help, please reach out to us.

Later… Wes

“Life” by Wes Bynum

sunrise picThe shadows lengthen.  The sun moves slowly, and steadily makes its journey to lands far away.  The orange red glow begins to melt into shadows and shades of grey.  A soft breeze is blowing and the leaves are dancing to its gentle rhythm.

Life

Somehow, in some way, and without clear definition, the light of day is no longer and the darkness of night is now.  Why did it have to come?  How did it get here?  How long will it last?  Does anybody notice?  What will happen next?  Some questions have logical, scientific, absolute answers.  Some questions defy our ability to come to any kind of answer at all.

Life

Darkness prevails. It is a time for contemplation and reflection.  Truth is hard to accept at times. At some point, thoughts and experiences become memories.  Tomorrow holds new hope.  Sleep deeply. Rest peacefully.  Dream sweetly…

Life

Now open your eyes!  Your heart is beating.  A sense of anticipation and excitement is in the air.  Light has returned.  Darkness has gone.  The sun is brilliant.  The sky is blue. The sweet fragrance of morning is carried along on the wings of the wind.  Soft, happy songs of busy birds gently touch the ear.  The soul of man rejoices.

Life.

Martha Jo Price, Friend!

Martha Jo PriceMartha Jo Price loved Nacogdoches, Texas, with all her heart.

Though she lived abroad in early adulthood, “Jo”, as she was affectionately known to her close friends and family, returned to Nacogdoches for most of her adult life.  She enjoyed everything about life in her community.  There was time to paint prodigiously in her home studio.  The local golf courses allowed her to perfect her game and to compete often and fiercely.  Most of all, she loved the company of her decades-long friendships.

It was her friends who introduced Ms. Price to the mission of Hospice of East Texas.  She played golf with Jessica Henderson, Hospice’s Director of Operations in Nacogdoches, and Leah Brasher, RN and their husbands.  Her friend, Sara Pennington, volunteered at the Hospice of East Texas Shop in Nacogdoches and shared stories about the shop and the mission of Hospice that the shop supported.  Ms. Price liked what she heard and became a regular and generous annual donor to Hospice of East Texas.

When Ms. Price became ill, it was a privilege for Hospice of East Texas to care for her in her final days, returning to her the same extraordinary care and support her contributions as a donor had made possible for others.  “We would not have chosen anyone but Hospice of East Texas to care for Jo,” said Pattie DeLamar, her close friend, golfing partner and executor of her estate.  “We already knew them.  We loved and trusted Jessica and Leah and knew Hospice of East Texas would provide the very best care.  And they did!”

After her passing in 2015, Ms. Price’s love for her home town bloomed into life with the granting of six transformational gifts to local nonprofits from her estate.  Hospice of East Texas was blessed to be among the recipients of Ms. Price’s ultimate generosity.

“Jo was an extraordinary woman,” said Mrs. DeLamar, “smart, accomplished and so much fun. She was not one for fanfare or fuss.  She would never have wanted to see her name up in lights, but she did really love the Nacogdoches community.  The gifts she made through her will are evidence of  just how much she cared about her home town and its people, and how much good she wanted to do.”

About Peanut Butter

He’s a small white and tan cat, and he belongs to Hospice of East Texas.

He chospeanut-butter-paintinge us, appearing in the back garden behind HomePlace one day, hanging around like he wanted to make friends.  A little shy at first, he roamed the edge of the woods, timidly crossing the lawn on occasion to sit in the sun by the gazebo.  Staff and patient families spoke to him as he sauntered by, and slowly he let us know that he had found his home.

One day, LaStasha named him:  Peanut Butter.

The nurses started putting out little bowls of food and water on the patio.  Courtney bought him a cat house and a bed.  Lisa bought cat toys.  Courtney bought him a second cat house and a climbing tree.  Brittnee Cagle from “Spay Neuter NOW” heard about Peanut Butter and  arranged for him to get his vaccinations, had him neutered and fitted with a microchip, free of charge.  A family member of a patient painted his portrait.   When the weather was cold, he cuddled in his house by the glass door and watched the traffic inside.  People in the hallways.  People on the phones at the nurses’ station.   When the weather turned warm again, Peanut Butter sunned on the lawn furniture, chased the birds at the feeders, acted the way some cats act, like he owned the place.

Over these months, Peanut Butter has not only found a home, he has found a mission.  In the gardens around HomePlace, families watch and wait, seeking solace in nature’s beauty, and as an outside cat, Peanut Butter seems to know who needs attention.   He slides up next to a lady sitting on a garden bench, rests by her leg, lets her know he’s there.  He walks back and forth in front of a gentleman who’s pacing the grounds, keeping him company.  He charms little children, filling the air with their squeals and giggles, but he’s too quick
for them to catch.  When patients can go outside, sometimes in wheelchairs, sometimes in their hospital beds, Peanut Butter is especially watchful.  He seems to know that those days, with the last touch of the sun on their faces, are precious and sacred.

There are many things that make the experience at HomePlace special.  Extraordinary care and medical attention.  Complimentary meals provided by a caring community.  A play room for the children.  The gentle touch and listening ear of volunteers.  To that list of special things about HomePlace, we can now add one more:  Peanut Butter.  For many families, his is that “extra touch” of comfort, offered with no words, just a caring presence, wrapped in white and tan fur.

Holiday Survival

img_7830As we continue through the holiday season, I wanted to send you a little encouragement for making it through these days.  Our instinct tells us that after the death of a loved one these can be difficult days as we adjust to all the changes that have come to our lives.

The good news is you do not have to wait for a special day to arrive and then simply see how you will react.  You can make choices that can help soften the day and move you along in the grieving process.

As you continue through this special season of merriment and memories, consider the following:

Planning Ahead… be deliberate and proactive in how you want to live that day.

Set your own tone… no one else can know how you feel or what you need.

Be realistic… recognize your limitations.

Be open and honest with your emotions.

Allow others to grieve in their own way.

Expect the best!

Keep this in mind; Choices…Control…Confidence…Stability… With each choice we make, there comes a sense of control. With control, comes confidence.  Confidence leads to stability.

Remember the past, embrace the present, and in the words of Thoreau; “go confidently in the direction of your dreams. (Dare to) live the life you have imagined.”

Take care of yourself!

Wes

Spaghetti…

Have you ever been invited to go on a trip with someone to some e030xciting or exotic location?  Well, consider yourself “invited”.  I would love for you to join me as I travel to a place near and dear to my heart.  You may not find it too exciting and you may not think of it as an exotic destination, but I believe you will find it a place of warmth and wonder.  We are going to take a journey into the past and visit a kitchen.

This is no ordinary kitchen mind you; this is my mother’s kitchen.  This is the place where loving memories were forever etched in a young boy’s brain.  This is the kitchen where my Basset Hound “C.B.” (short for Cornbread Buttermilk) ate the fresh strawberry cake shaped as a heart that my mother had tenderly taken from the oven and had left on the counter to cool.  This kitchen is where countless chickens were fried; potatoes were mashed; beans were boiled; breads were baked; cakes were made; eggs were scrambled, fried, poached…you get the picture.

One of the most fascinating things that took place in mother’s kitchen was the cooking of spaghetti.  I was always captivated by the process. Mom would begin by picking out a certain pot from under the counter, add water from the faucet, a pinch of salt and then set it on the stove to bring to a rapid boil.  She would then go to the pantry and bring out the spaghetti.  Once I saw the spaghetti exit the confines of that cabinet I knew that the best part of the process was only minutes away. At just the right moment my mother would take the spaghetti out of the package and hold the uniform bundle of pasta in her soft hand, turn to the stove and hold the “innocent sticks” over the pot of boiling water in dramatic fashion. Next she would release the spaghetti from her gentle grasp and it would fall into the water and I would watch with wonder as the spaghetti would form a fan around the rim.  As the water temperature would quickly come back to a boil, the spaghetti would begin to change.  It would begin to grow limp and gradually sink into the pot.  The minutes would pass by, the cooking process was underway, it would not be long before it would be time to drain the pasta in the big metal colander, add a touch of oil to keep it from sticking and get ready to add the sauce.   Fascinating!

When I think of the losses that I have experienced in this life, I think of mother’s kitchen and the spaghetti that she would cook from time to time.  It seems to me that I can almost understand how the pasta must have felt as it was taken from the familiar surroundings of the pantry shelf, removed from its package and exposed to the violent heat of the boiling water.  I remember the feelings that came when my nice, neat and straight routine world was transformed into a limp mass of twists, turns and curves.  Perhaps most of all I am reminded that, just like the spaghetti no matter how hard I try, I will never be the same again.  The grieving process has changed me and life is forever different.  I cannot go back to being what I was before.

Are things worse? No, just different.  In fact, in many ways things are much better.  I believe I am much more valuable (eatable) after being touched by loss than I was before. Now that I have spent years trying to adjust to life as it is, as opposed to the way it used to be, I feel that I can say; yes the process is difficult at times, and yes the water is hot, and yes the transformation is not easy.  However, all things considered, I have found that the end result has been exciting in a way.  As a matter of fact, the transformation has been much more enjoyable than I would have ever imagined (esp. if you add the sauce).

Something to think about…

Later, Wes

On Loan to Us…

tracee-and-stacee-1Lucy* and her twin sister were born much too soon.  They received wonderful care in a local neonatal ICU, and though her sister slowly began to thrive, Lucy had complication after complication which left her with severe brain damage.  She could suck and swallow, and thus receive nourishment, but she was unable to see or hear or even regulate her tiny body’s temperature.  A special warming blanket, sensitive to the ebbs and flows of her temperature, kept Lucy comfortable and safe.  It was not a long term solution.  Lucy would not live for very long.

After three months, Lucy’s sister was ready to go home, and the family wanted to take Lucy home as well.  There were four siblings to welcome her, and parents who loved all their children deeply and were committed to doing all they could to care for their tiny, fragile daughters.  At the request of their pediatrician, Hospice of East Texas stepped in to provide care for Lucy and support for her family.

The highly complicated warming blanket Lucy needed was not normally sold to anyone but neonatal intensive care units, but Hospice staff talked the company into selling one to Hospice of East Texas so that Lucy could have it at home. While Lucy was being transported by ambulance the fifty miles to her home, Hospice staff arrived to help the family get ready.  When the blanket was plugged in, it blew out all the fuses in the modest trailer home.tracee-2

It was early evening and Lucy was on the way, so there was nothing to be done but improvise.  Hospice staff bought a heating pad at Walmart, took it to the house and stayed with the mom, instructing her to take Lucy’s temperature every thirty minutes through that first night until another warming blanket, with fewer electrical demands, could be purchased and delivered.  The new blanket arrived the next day, and over time, the family gradually settled into a complex and demanding routine, meeting the needs of two newborns and four other children.

One day, Lucy’s mom said the most extraordinary thing.  “I know she’s mine,” she said, “but she’s only mine for a little while.   She’s on loan to us, and then she will go back to God.”

Make no mistake about it.  That Lucy is able to spend her final days on earth at home with her family would not have been possible without the Hospice of East Texas and the support of friends like you.  And make no mistake about this:  only the Hospice of East Texas would go to such extraordinary lengths to give Lucy and her family the gift of time together as a family in their own home.  Caring for Lucy requires constant visits from nurses, frequent phone calls, special feedings and expensive equipment that Hospice of East Texas may never use again.  Your gifts make it possible for Hospice of East Texas’ to provide this extraordinary care and  fulfill our commitment to care for each patient who needs us, no matter what it takes.  Lucy’s family, who does not have health insurance, will never receive a bill for the care they receive.

As her mom expressed so poignantly, Lucy is on loan to her family for just a short while, but in that time, her family has enjoyed the gift of her presence, all of them together in their home.

As this newsletter goes to press, Lucy and her twin sister just celebrated their five month birthdays, a milestone no one expected Lucy to reach.  “It’s love – and God – that are keeping us together,” said Lucy’s mom. “It’s been a blessing.”   Indeed.

Caregiver Take Care… Part 4

IMG_8417It has been a while since I have carved out some time to sit down and reflect on the subject at hand.  Have you ever noticed that just because you know to do something doesn’t necessarily translate to you doing what you know to do?  For instance, most of us have a general idea of what it means to eat healthy and yet…enough said right?  Habits, especially old habits, provide us with such an easy and familiar path to follow.  It takes quite a bit of insight and energy to break free from established patterns of life.  Doing things that are new things, breaking the old mold, staying off the well-worn trails, these things are challenges for each of us and particularly for those of us who are caregivers.

The question I present today is… Where Do I Begin?  Where do I go? Where do I need to get to before I can change directions? The answer is (in my opinion) you begin right where you are.  So often we get our mind set on a “place” we want to get to so that we can start something new.  We want to have a certain amount of money in our bank account before we begin to invest and save our money.  We want to enjoy one more piece of cake and one more scoop of ice cream before we begin that new diet.  We want to take care of any number of small details that are often connected to any number of other people, before we begin to take care of ourselves.  Begin to make the changes in your life… Today!  Start where you are, working with what you have to work with today.  Before you can break a habit, you have to recognize that it is a habit that needs to be broken.  Before you can make an adjustment in who you are, you must first realize who you are and right now you are a caregiver.

As I have written in these articles, the best way to be the best caregiver you can is to take time to take care of yourself.  As you move forward remember; it is the little things in life that are the great things in life.  In other words, don’t sweat what you don’t have or what you can’t do.  Try not to worry about getting to some far off, down the road destination before you begin.  Today is what you have.  Today is where “someday” begins.  Where you are is the best place to start.  The tools you have are the best tools you have to work with.

In my office I have a beautiful picture above my desk.  It is a scene of a mountain and forest and an eagle flying above the mist.  Next to the picture is an old beat up 3” paint brush.  I keep things in this juxtaposition on purpose.  Every time I look up and see them I am reminded that that beautiful picture was not painted by that paint brush.  That picture required more than a few strokes from a wide brush.  It required thousands of small touches using a much smaller tool.

So often we approach complexities in life with the biggest and widest brush we can find.  We want to “paint over” our problems as quickly as possible.  We want to do something really big in order to achieve what we hope will be a lasting change.  In the process we often overlook the importance of the really small things.  And, yes, we want to “be” somewhere else before we begin to do what we know to do.  May I suggest instead that you simply begin where you are?  Caregiver, take care.