A NYTimes article in December, 2009 discussed lessons learned in end-of-life care.  Here is the link: http://www.nytimes.com/2009/12/23/health/23ucla.html?pagewanted=1&_r=1

I read the article, and below I pasted some of its evocative statements:

“It can be hard, sometimes impossible, to know which critically ill patients will benefit and which will not.”

“Many acknowledge that the current payment system encourages more care, because it rewards doctors for providing additional tests and procedures”

“But the bigger challenge may be changing the “we’re not going to let you die” culture at places like U.C.L.A.”

The article noted competing studies.  Once concluded that intense spending at the end of life improved outcomes, and the other concluded otherwise.  Which one are we to believe?

Some experts will tell us that decisions are made on a case-by-case basis.  That statement is true, but it doesn’t give us any guidelines.  And it ignores the different approaches that exist within different hospitals.  There are competing sub-cultures of care.

There are two conclusions I can draw without hesitation.  One is that there are no easy answers in end-of-life decision making.  The second is that we as a culture of Americans must change our approach to end-of-life care, and we must couch it within a Judeo-Christian model.

That ethos tells us that is that human life is precious because we are made in God’s image.  And, that death is not to be seen as the ultimate enemy, because our Savior has defeated death.   Within the tension formed between those two universals we can find our guidance.

While I was traveling in Kenya last week I heard a moving story about hospice care.

A man had been diagnosed with terminal cancer.  When he received the news, he said to his friend, “This is a win-win for me.  If by some miracle I live, I’ll be here with Nancy.  If I die, I will be with Jesus.”

From the cross, Jesus said seven phrases.  During Lent, believers contemplate His words.  In one of those sayings, Jesus says to the thief being crucified next to Him, “Today you will be with me in Paradise.”

Here is a link to a story and discussion about how doctors wrestle with telling terminal patients the truth about their condition.

http://www.pallimed.org/2010/02/23-of-truth.html

I am in Nairobi, Kenya this week working in prisons with Prison Fellowship Kenya (www.pfm.org).  While here, I met a man who has some experience with Kenyan hospice, and a young lady who told me a story about a her friend.

There is only one hospice in Nairobi, a town of 3.5 million people.  Most patients are AIDS sufferers, and it sounds like the hospice teams are doing a great job treating symptoms.  There is no federal funding for hospice, so patients must pay what they can.  Private donors cover the rest.

I heard about a woman, age 23, who was diagnosed last year with inoperable brain cancer.  She has just a year left, and is starting to lose her short-term memory.  When she finally heard the news about her condition, she told her friend, “Hey, I don’t have to be an architect now!”

I’ll throw in one more comment in about her case.  Apparently, she went mis-diagnosed within the Canada medical system.  She had been seen several times, received a diagnosis of stress, and never returned to the doctor until her pain became excruciating.  Apparently, in their system, it can be difficult to get a physician appointment when you need one.  For many, our system isn’t much better.

These stories make me think of my Savior’s words, “Come to me you who are weary and heavy laden, and I will give rest.”  That is a Savior worth worshiping.

Here is a  list of the top 50 hospice blogs.  I like the list because it breaks out the blogs into categories, such as hospice law, and caregiving.  I do note that they don’t have a category for spirituality, which is the focus of the Fort Worth Texas Hospice blog.

For those of you who are family caregivers, I think you will find some of the blogs and forums very helpful.

Here is the link:

http://nursesassistant.org/2010/top-50-hospice-care-blogs/

Some of our patients come to us taking 5 or more medications.  We try to take them off as many as we can.

There are lots of good reasons for stopping medicines.  Many patients, particularly those suffering from dementia, have a hard time swallowing pills.  And studies show that over-medication is a common cause of falls in the elderly population.

In hospice, here in Fort Worth or anywhere, we emphasize palliation.  So we look at each medicine and determine whether or not it is providing symptom control.  If it isn’t, we discontinue it.

Often it is easy to make this determination.  Examples of non-palliative drugs are cholesterol medicines, and iron or calcium supplements.

Sometimes, though, it isn’t easy to determine whether or not a medicine should be pulled.  For example, most people feel that blood pressure medicines are not appropriate in hospice; however, some blood pressure medications also keep the heart rate in check.  Stopping one of those might induce shortness of breath.

The most common medicines we use in hospice are pain relievers.  These are miracle workers for many.  But they don’t come without side-effects, such as constipation and changes in sensorium.  So we have to be careful.

Some of my friends feel that when we take medications, we are not trusting God to heal, or take care of us.  I used to be fairly aggressive in countering that opinion, but I have lightened up in recent years.  For some people, God may ask them not to take treatment.  He may be working on something else within them.

Generally, I feel that science is a gift from our Lord, who created the universe and all its physical laws.  God has allowed humans to study these laws and use them to relieve suffering and treat all kinds of disease.

One of the aspects of Jesus’ healing that strikes me is that he would always engage people in conversation when he healed them.  He could have blinked and healed all sick folks within a five-mile radius of Him.  If his intent was only to heal, He probably would have done that.  But He wanted something more, and that was relationship with us.

My favorite example is the blind man, Bart, I believe was his name.  After some townspeople led Bart to Jesus, Jesus asked him, “What do you want me to do for you?”  I’m sure Jesus knew that this guy was blind and that he wanted Jesus to restore his sight.  But He wanted the Bart to tell him.  I think He wanted closeness and relationship with Bart, just as He wants with each of us.

Often, one of the Texas Hospice patients suffers a “non-hospice diagnosis,” which is an injury or disease that is not related to their reason for coming onto our hospice service.

An example, which occurred to one of our patients this past week,  is when a patient suffering from end-stage dementia breaks a hip.  They may require hospitalization and surgery.  All during the hospitalization, they remain on hospice.  We attend to their and the family’s needs related to the dementia diagnosis.

Medicare continues to pay for the hospice benefit while covering the hip repair costs at usual medicare rates.  Remaining on hospice does not add expense to the patient or their family.

The hospice community here in Fort Worth works closely with the hospital staff during these times.  In this recent case, the Texas Hospice staff, including social worker, chaplain and nurse, spent a fair amount of time with the family, guiding them through the decision process, and providing comfort.

There were a fair number of decisions the family had to make.  Here are a few:

1. Do we want our loved one to have the surgery?
2. Which hospital?
3. Which surgeon?
4. How aggressive should the post-operative physical therapy be?
5. Which skilled nursing facility?

A good hospice agency should have knowledge of the local physicians and facilities so as to provide good direction to the family caregivers.

I am reminded of the biblical story in which four people helped their lame friend get to Jesus, who was teaching in a house.  Since the crowd had made the doorway impassable, they lowered the man into place through a hole in the roof.

Just like the four friends, we, at Texas Hospice, want our patients  and their families to meet Jesus, to know his love and power, and to always experience his healing.

I returned two days ago from a 9-day disaster response trip to Haiti.  While in Port-au-Prince, I took video and wrote what I was seeing and doing.  Here is a sample:

“All is well here. At same hospital as yesterday. A lot slower. We are bringing in 15 post-op patients who will stay here until well. Two of us will remain here overnight.

Still seeing fractures, dislocations, and wounds. I think the Haitians are beginning to grieve, now that the shock is over and life is returning to somewhere closer to normal. They are telling me about their relatives who died.

We had been in an air-conditioned bus, but today we rode in a caged flatbed truck. We could smell rotting bodies as we drove through town.”

If you would like to view the rest of my reporting on our Haiti medical relief trip, visit www.brianinhaiti.blogspot.com.

A small percentage of Texas Hospice patients do not follow the normal, expected course of decline toward death.  Instead, they return to good health after receiving our care.  These are our graduates.

A good example was a patient of ours who suffered from dementia.  After receiving daily hospice aid visits, music therapy, a cleaner bed and body, and attention from nurses, chaplains and social workers, she began to perk up.  She regained some lost speech ability, and began to feed herself again.

In these situations, often the family caregiver receives needed rest.  Well-documented studies tell us that caregiving can be so stressful so as bring on heart disease, or even early death.  Hospice care goes beyond the patient.

All along, we at our Fort Worth hospice agency monitor our patients’ progress or decline.  We praise our Lord when they improve.  And, when hospice is no longer appropriate, we help them receive other care, such as what a good home health agency would provide.

The story doesn’t end there.  This past week we admitted a patient who had previously been on our service.  While we were previously involved in her care, she improved, and we were able to graduate her from hospice.  Over the past few months, however, her condition declined, and our services were again needed.

And so, though most of our patients follow a normal hospice course, we are able to see, about once a month, a human being regain health that was lost.  It is another facet of hospice that makes the work so fulfilling.

There is a tension between medicine and business: business demands cost efficiency, while medicine requires excellence at any cost.  Now that healthcare is receiving a legislative overhaul, we are introducing a third player in the game, the government.

Most of us vote for whatever legislation benefits us personally.  That is why the hospital and insurance lobbyists dislike the new bill, and folks that currently don’t make enough to afford insurance favor it.  What we are seeing is the people deciding, via elected legislators, who will pay more and who will pay less.

Since I am a family physician, and a Fort Worth hospice agency owner, I am quite interested in the final bill.  It will affect my clinic and hospice patients, and it will more than likely decrease my income.

The bill’s final version probably will not scale back the hospice benefit.  That is good news for the hospice community.  The bill will more than likely cut funding for medicare advantage plans.  Bad news.  Millions of seniors, and hundreds of my patients, receive care through these plans.

Details?  We are not sure yet what will be cut.  The bill will give power to a medicare oversight committee.  That committee will experiment with cuts here and there, and expand those cuts that save the most money and disaffect the fewest people.  At least, that is how it is supposed to work.

We can never forget the law of unintended consequences!

• Will we receive shoddy medical care if nurse and physician pay decreases?
• Will medication research stall out if generic manufacturers win their right to enter the market sooner?
• How will hospitals and doctor offices handle the millions of newly insured patients?
• What will happen to county hospitals when a portion of their patients acquire insurance and go elsewhere (i.e. how many people will lose their jobs there?)?

Whew!  That is a lot to chew on, and too much to worry about. In ancient middle-eastern history, the prophet Jeremiah said to the Hebrew nation, then exiled in Bablylon, “seek the peace of the city where I have called you to be carried away captive.”

As followers of Jesus, we are under orders to work for peace here, where we are sojourning.  Within health care reform, I think that means involving ourselves in the process, all the while, trying to civilize the dialogue, and avoid pushing just for what benefits us the most.

Regardless of what the elected humans distill from their final negotiation, I will hope in the One who is worthy.  I like this Chuck Colson quote: “Where is the hope?  Our hope is not in what laws are passed, or who governs us.  Our hope is in the power of God working in the hearts of people.”