I went to a restaurant because I needed to eat.  After sitting in a waiting area for awhile I was finally given a table and a menu and told someone would be with me shortly.  Ten minutes later someone told me that my waiter had not yet arrived at work but would be here shortly.  Another 20 minutes later I finally met my waiter, who spent a fair amount of time going over the options and over what would be best for me.  I was pleased when he said that I would receive a delicious and nutritious meal.  When he mentioned that I would have to go to another restaurant to receive the first course of my meal I was confused, however.  Nonetheless, I made the appointment for later that day and went as scheduled.  There I received a little of what I wanted but was told that I’d need to go back to the original restaurant and see the waiter again.

It was now 2 days later and after I again waited to be seated, then waited to be waited upon my waiter finally came.  He explained to me what I had eaten and how it would help me, and how it would help him to better know what I now needed.  However he also needed to send me to yet another restaurant where I would eat a little more but also talk with the waitress who would use all that information to tell me what I would need to really be nourished.  Two weeks later I finally met with the waitress and was told that I would need to visit yet another restaurant once a week for six weeks, as well as go to a take-out place and eat small portions of another nutrient daily at home.  I wondered if it was all worth it but I was told that this was what would keep me healthy.  And since everybody else I knew did the same thing I figured ‘what the heck!’

Funny thing was, I never really knew what my meals cost because my employer had decided to pay for a portion and take another portion out of my monthly paycheck.  Then every once in awhile I’d get a bill from this restaurant or sometimes from a specific chef whom I never actually met.  I even got one from the produce supplier.  Oh well, if it keeps me healthy and I live longer, it’s worth it. It’s no wonder we sometimes refer to our health insurance as ‘cafeteria plans.’  We wouldn’t put up with all that from a restaurant in the real world but we don’t bat an eye at putting ourselves through it to receive medical care.  In the end, though, medical care won’t feed us and extend our lives.  There are no magic foods or pills or surgeries or treatments that can prolong life indefinitely.  I don’t believe there ever will be.  I don’t see death as a disease we will one day cure.  I see it as a natural end to a long life, just as dessert is the natural end of a satisfying meal.

Hospice is like that dessert.  It’s not nutritious but it comes with all your favorite comfort foods.  You don’t sit in any waiting rooms.  Your wait-staff comes to you in the privacy and comfort of your own home as often as you need it.  Need your comfort food in the middle of the night?  We’re there for you.  Need someone to talk to while you eat dessert?  We’ll provide them too.  Want a singing chaplain to serenade you?  No, you aren’t allowed to tip.  You won’t even see the bill.  And we insist that your family dine with you…provided that’s what you want.

Now I’m not ready to call it a life just yet.  I hope to have many more years ahead so I’ll keep going through the restaurant routine until the day when the doctor says, ‘You’ve eaten enough dinner.  It’s time for dessert.’  Some are dismayed when doctors use the word ‘Hospice.’  I hope when it’s my turn I’ll understand that this is the way a good meal should end.

Rev. Ron Jetter, Executive Director Lower Valley Hospice and Palliative Care

I’ve been a pastor and I’ve been a chaplain.  Some will say, “Isn’t that pretty much the same thing, except one deals with folks in a church and one deals with people in a hospital or military?”  The differences require me to talk about two words: spirituality and religion.  Chaplains are ‘spiritual caregivers’ whereas pastors (substitute minister, priest, rabbi, etc.) are ‘religious practitioners’  There is a distinct difference between ‘spiritual’ and ‘religious.’

Spiritual deals with universal questions of origin, purpose, ethical behavior and destiny.  Spiritual care tends to honor questions rather than give answers.  Humans are spiritual beings in that we possess spiritual needs and ask spiritual questions.  The answers to these questions may take us into other areas of thought, such as science or philosophy or religion.  But the questions about what it means to be human — why we are here, how we should act toward self and other, what will eventually become of us and the universe – these are spiritual questions.

Our nation was founded upon the principal that all people have a right to express their spirituality and to seek spiritual care.  Those whose circumstances make it difficult for them to seek spiritual care are entitled to have spiritual care come to them.  This includes those serving in the military, those in prison or jail, those in a hospital or on Hospice service.  The role of the spiritual caregiver is to help the soldier or patient or inmate formulate his or her own spiritual questions, to identify spiritual practices that bring comfort, to help provide access to hope, joy and inner peace.  Spirituality deals with ethical questions as well, asking the basic question of ethics, ‘what seems to be the best lasting good that can come out of this?

By contrast, religion deals with specific beliefs, doctrines, practices, rituals and morality.  There is a correct way to think, speak, believe and act.  Religions have religious practitioners who specialize in their specific religion, denomination or sect.  Their role is to guide, govern and preside over the gathering or otherwise aid the individual seeking to become or already professing to be an adherent to that religion.  A religious question tends to be more specific than a spiritual question because there are pre-existing assumptions in all religions.  Our nation’s forefathers wanted to protect the shell or framework within which religion can be freely practiced while not allowing a specific tenet or brand to become the official religion.  We are a spiritual nation where people may freely be religious as well.

Religious behavior, including defined morality, deals with behaving in such a way as to reap the benefits of the specific religion.  Acting in a right manner means being in a right relationship with one’s higher power.  The defined morality, unlike ethics, is not generally open for discussion and amending.  It is part of an inherited tradition.  A large part of religion’s purpose is to answer the questions that spirituality asks.

Many Hospice patients have religious affiliation.  The role of a Hospice chaplain may be to ensure that the patient and family are able to involve their minister or priest in their care.  With permission of a patient a chaplain can keep the cleric up-to-date so as to be present when most needed and to conduct rituals or rites that provide the patient with comfort and hope.  Still other patients have religious beliefs but are not affiliated with any community of faith.  Sometimes there is estrangement or change in active participation as health declines over many years.  The chaplain’s knowledge base includes general information about a number of faiths so as to offer assistance to the patient and family.

Then there are those who have no stated religion and no desire to have one, seeing no particular value in such.  The chaplain can honor their spiritual questions without having to suggest religious answers that are not asked for.  Some people at the end of life want someone just to listen.  A conversation may involve reviewing the patient’s life, honoring significant milestones.  Themes such as reconciliation and forgiveness tend to bridge the gap between these two worlds.  A sense of peace at the end of one’s life may elude the one who has avoided acknowledging a hurt or betrayal.  Chaplains can help to work through the leftover ‘spiritual baggage’ and help patients and families move toward a common goal of a peaceful end of a life.  In the chaplain’s toolbox are words, songs, poems, questions, answers, listening ears, broad shoulders and a caring heart.  Which of these get used is up to the patient and their family.

Rev. Ron Jetter, Executive Director Lower Valley Hospice and Palliative Care

Grandpa passed a month ago and grandma is finally going through her late husband’s box of medicines.  He had lots of them and kept them all together in a shoebox, which sat on the bathroom counter top.  He won’t need them anymore but some of them may be useful.  She is familiar with most of them; they always accompanied each other on visits to their doctor.  But now that he’s gone, what should she do?

When a Hospice patient passes we have specific recommendations for families, stressing the importance of proper disposal of medicines as soon as possible following a death.  But when someone passes in a hospital, or even at home, and the family has not had Hospice service, what do they do?  Who do they call?

The primary physician or the pharmacist should be first on the list of people to call to answer questions about medicines prescribed or dispensed to your loved one.  For prescription drugs you will be told that under Federal Law, a drug prescribed for one person cannot be given to another.  It seems such a waste to many people.  Practically new bottles of perfectly good and generally expensive medicines going to waste.  One reason certain drugs are ‘controlled’ and can only be available through a doctor and pharmacist is because these drugs have potential to do great harm when taken by someone to whom they were not prescribed.  When the person passes away, the medicines need to be disposed of in a safe manner.  Even OTC (over-the-counter) medicines can pose health risks.  Taking them out of grandpa’s box and putting them back in the medicine cabinet requires good judgment.  When it doubt, please call your doctor or pharmacist.

How do you dispose of medicines that are no longer needed?  What is a safe way to dispose of them?  We recommend placing liquids and pills together in a glass or ceramic cup, adding water to ensure that pills dissolve, then pouring the solution into a container filled with Kitty Litter.  A paper half-gallon milk container works great.  Cut the top third or half off carefully.  Then fill the bottom half to almost full with Kitty Litter.  Make sure that it is more than just sand.  Most commercial brands of Kitty Litter contain substances that turn liquids into a clay-like mass, ensuring that the medicines are trapped and irretrievable.  This carton should then be placed in a plastic bag and sealed, then placed in the trash.  Make sure the glass or cup is rinsed and washed several times.

What happened to the good old days when we flushed medicines down the toilet or sink?  Neither the cities nor the County are comfortable with placing potentially toxic substances into the waste water system.  While not all government entities have passed specific regulations prohibiting the flushing of medicines it makes sense for us to be more aware of how we dispose of hazardous substances.  Some pharmacies allow bringing medicines back to the store for disposal.  We do not recommend this for Hospice patient families as we do not want medicines transported out of the home, nor will any of our staff transport medicines out of home or facility.

Fortunately grandma did the right thing.  She called her daughter to come and help.  Together they made decisions about each container of medicines, writing down a list of questions so that when they called the pharmacist they made only one phone call to respect the pharmacist’s time.  When the task was done the medicine cabinet had a few more things in it and a tightly wrapped plastic bag containing a milk carton with Kitty Litter sat safely in the trash can.  The many other tasks that faced grandma as she came to terms with her great loss were still ahead of her, but at least she could put her mind at peace about this one thing.

Rev. Ron Jetter, Executive Director Lower Valley Hospice and Palliative Care

I ‘googled’ the word PAIN to see what would come up.  There were all sorts of remedies for physical ailments being offered.  Some sites were helpful, educational, but all failed to describe pain the way I heard it described by Dr. Paul Johnson, Medical Director of Skagit Hospice.  Dr. J was over here a few months ago to share what he’s learned from a life of serving those who experience pain.  Palliation of pain (i.e. making it go away) is his specialty.  He speaks of 7 kinds of pain.

Physical pain is the obvious one.  I remember mom asking the question, “Where does it hurt?”  What she expected me to do was either point to a specific body part or give her a simple two-word answer: my tummy…my throat…my tooth.  It’s the simplest way of diagnosing a simple problem.  Humans are far from simple, however, and I have learned from my work at Lower Valley Hospice to see more than physical pain.  As part of an interdisciplinary team our staff is trained to see pain more holistically.

Intellectual pain involves mental anguish and incorporates those parts of our memory that hold on to regret, shame, knowledge of harm done and anticipation of an undesirable future.  Those whose memory functions begin to deteriorate have a great deal of intellectual pain in the early and middle stages when there is knowledge of the loss and anticipation of getting worse.

Emotional pain is a spontaneous inner reaction to something we are thinking about or experiencing.  If you’ve seen one of those cute charts with the round happy faces contorted into all sorts of expressions you know that there are hundreds of words in our vocabulary to describe feelings.  Generally I think of most emotions falling into the categories of SAD, MAD, SCARED or NUMB.

Social or interpersonal pain comes from damaged relationships or lack of supportive social system.  Families, friendships and marriages experience strain and strife.  Relationships between parents and children undergo changes and are fraught with misunderstandings.  Unrealistic expectations lead to failed dreams, disappointment and blaming.

Spiritual pain involves uncertainty over life’s big questions of origin and destiny.  Often our earliest experience of spiritual pain comes as a child trying to grasp what it means to live as a finite being in a universe that seems infinite.  What does it mean to live a significant life and does this have anything to do with what happens after death?

Financial pain can be seen all around us these days.  It is a global reality and will remain one for the foreseeable future.  Yet it is also personal for many and becomes the primary determining factor which limits access to needed basic resources of food, adequate housing, clean water, safety and health care.

Bureaucratic pain is the frustration and helplessness that comes of living in a complex society where resources are accessed through systems requiring reams of paper, a plethora of procedures and the compartmentalization of services.  It leads to a sense of resentment and resignation, a sense that a society capable of putting someone on the moon ought to be more efficient at basic things.

One of the reasons I was drawn to Hospice work was the desire to be part of a team of caring people who together bring creative solutions to individuals in need to give answers to all 7 kinds of pain.  Too bad Hospice is only available to those in the last months of their lives but thank God it is available then.

Rev. Ron Jetter, Executive Director, Lower Valley Hospice

A number of people gathered ‘on the bridge’ of this vessel called Lower Valley Hospice, where I serve as ‘Captain.’  Through that marvel called the internet we were able to watch live as Chief Justice Roberts swore in Barak Obama as the 44th President of the United States.  Most of the speeches connected with the event, and even the prayer by Saddleback’s Pastor Rick Warren, spoke of how this event signaled a new era of ACCESS.  Kids born in poverty now had access to the highest office in the land, regardless of race, creed or color.  The new ‘leader of the free world’ promised that ordinary citizens would again have access to a government that had become captive to lobbyists and those with money.  Everybody would now gain access to quality medical care.

The reality is that access and money have always gone together.  When access has been given to those without the resources to buy their way in it is only as a result of a grand effort by many over years of struggling.  Those of us who do not have physical disabilities sometimes forget how essential handicap access is for those with disabilities.  Before the Americans with Disability Act (ADA) was passed by Congress in July, 1992.  Business were not in favor of it; modifying facilities or building new ones cost money.  Some said it would break small businesses when the ADA was extended in 1994 to apply to businesses employing as few as 15 employees.  There was testimony on both sides of the issue.  What finally came through was the sense that those whose daily lives include physical challenges just to get from one place to another should not be hindered from participating as fully as possible in life.

Through our Pediatric Palliative Care program we serve kids who will never know what it is to do ordinary kid things, like ride a bike, go swimming with a friend, ride a school bus, go to the Prom, walk on Graduation Night to receive a diploma.   All of these kids have a life-limiting condition or disease.  The Federal powers that be have determined that they should have access to either curative medical care or palliative (i.e. comfort) medical care, just as it is for adults who choose Hospice.  When an adult chooses Hospice service, he or she recognizes that curative treatments, such as surgeries or transfusions or chemotherapy, are no longer changing the outcome.  The disease is at its ‘end-stage.’  The hope shifts to being comfortable, surrounded by family and the familiar atmosphere of one’s own home.

As a parent I cannot imagine how hard it is for other parents to reach the point where they accept that death is inevitable.  Most cannot make the mental, emotional, spiritual shift from the hope of a cure to accepting comfort care alone.  Fortunately, some states such as Washington recognize the need for children from birth to age 20 to have both ongoing access to curative treatment and palliative care.  Though the funding does not cover the actual cost, it is enough to make it so that generous donors can provide the difference to keep this essential service going.

We are the only rural licensed service in the State offering kids and their families the comfort measures while they still pursue whatever new possibilities Children’s Hospital can offer.  We work hand-in-hand with Children’s Hospital to ensure that kids and their families can spend as much time as possible in their own homes, rather than living out of suitcases.  Trips over Snoqualmie Pass are minimized as parents learn to be partners in taking care of their children with life-limiting conditions.  For all of you who help us to keep this vital part of Lower Valley Hospice going, thank you very much.  For all of us who take life, health and access to facilities and services for granted it is easy to forget how hard it is whose burdens are unduly heavy.  Sharing a small portion of the burden may help make it a little more bearable for them.

Rev. Ron Jetter, Executive Director Lower Valley Hospice and Palliative Care