Permanent Feeding tube ? What about YOU ?
Walking into the rehab room on the black board is a message for me:

Sam "RM 102 A Swallow eval &Tx".

(next to the nurse station I thought...probably serious...)

Loved one, many times I have met with the crying daughter, the weeping wife, the stoic husband, the confused and shocked son...In my speech pathology office down the hall from the hospital bed. We meet a few steps from their loved one who presently is heaped upon a plastic hospital mattress covered with a white clean sheet looking like she is deep asleep. Mom is not the boss here, mom is not doing anything. Mom has just been laying there like that with her right side looking funny for the last 6 days, since they found her on the kitchen floor.

Now is the time in their lives to focus on the ultimate health care of a very important loved one ....the entire family...dad and 3 boys all do not have their Loving Anchor anymore. Pandemonium maximus... family habit patterns break down mas rapido....A restructuring of the family happens. The group is without the old dependable primary leadership source. It is a learn as you go sorting out process... a lot of big spiritual lessons get learned all around really quickly.

After a brief meeting with the nurse on duty...and seeing if the doctor order is in the chart/diet texture/precautions....I go visit the nurses aide who has been directly attending to the new admit for the last 6 -12 hours. The picture becomes clearer as I also see that family and friends are spilling out into the hall with flowers and cards with pretty pictures. Everybody is dressed up.

Upon entering the room in bed I observe a short patient, about 86 pounds over weight, unconscious, feeding tube in her nose, saliva out the right side of her face, IV in her arm, I am told she responds to voices sometimes, at present no stimulable visual or auditory tracking, the chart reported a startle response during 3 am medications. Labored breathing, suctioning equipment bedside, Nurse reports patient exhibits inconsistent response to pain.

I wash my hands and say hello, hold her hands and introduce myself. Her communication may be a light finger movement, it may be ceasing of a motor movement, it could be a stare like none you have seen before....and where she is now is where we will start in the therapy of rehabilitation of her safe eating skills. Safe biting/chewing/swallowing mean no risk of aspiration, that is food/drink into the lungs. If oral motor rehabilitation can be done then safe swallow skills can be improved, in addition to specific accommodations of positioning/texture/thickness/distractions/food likes/and oral motor skills.

All her loved ones are standing around focused on the healing of their loved one...non stop stories about how loving and sharing she was echo against the walls....the skills of a speech pathologist are brought to bear.... It is amazing to watch when a (stand in the background type)wife rises to the occasion meets the Dir. of Nurses...gets a private room...steers the company her now disabled spouse started 40 years ago...and requests oral motor rehab, speech and language therapy 5 times / week..... Carry over activities with participation of private help can make a big difference.

Now the work really begins.

Thoughts fill my mind....
I begin to carve out a private spot to talk with the family...Usually I use the top of my brief case as a desk... I microwave water and bring my coffee kit and some tea/chocolate ...And try to help this responsible adult/family determine the answers to some immediate questions. What motivates mom? has she responded to you? Any thoughts about your loved ones and long term use of feeding tubes ? What were the specific wishes of your Mom/Dad/Daughter/Son who is at present learning that life can change in a second.... Awakening with a right side paralyzed, language whacked big time, Oral speech is broken....out of the question safe bite/chew/swallow for the moment... Requires suctioning....High Aspiration risk....History of smoking...Diabetic... I closed the door and starting chugging my coffee with 3 sugars ...A jillion memories of traumatic injury children, dirt bike accident young adults, memories of people, and their loved ones, hung out on tubes hailed my brain.....Bottom line is it is up to each individual as to the choice about their own tube.

Commandeering the Rehabilitation Office before we huddle to talk about strengthening the right side of moms tongue/jaw/protective cough... I continue to ponder ... did their loved one say "How" they desired to live the remainder of this incarnation. Any one thought about this quality of life stuff ?...Laying in bed a couple of years ? Did your mom ever talk about being kept alive in a skilled nursing facility 7 or more years......Battling bed sores, depression and constant pain....? Did anyone discuss it....Did anyone accept responsibility for this decision....? Possibly someone will need to decide to tube or not....Then if the decision is made to do the permanent tube...To keep alive that broken body....Will later that same someone be forced to option for "stop feeding & comfort care" when the bed sores are the size of grapefruits, when the severe discomfort is sustained and constant? When the consciousness of the individual is long gone...Is pain and life at all costs the way to go ? Well I am not saying any of this to the family of course, I am most aware certain lessons are being learned...I must be objective as to the instructions I receive. These are their lessons...Quality of life issues really only begin to have significant meaning when freedoms are diminished. Thank God for melita coffee filters and Peets coffee...

Some years ago I was with two grown adults, a daughter and son, both still fighting over the family monies/old beefs/ sibling stuff...Both stood together crying on either side of the stainless steel bed, next to Daddy as he was in the last hours of the very last day of end stage Parkinson Disease. The Dominate big sister had made the decision and demanded to tube Dad(6 years earlier) because she loved him and did not want him to die. That was years ago...Back when he could smile. She said her brother wanted to get rid of him so he could continue to live in the family home rather than liquidate and pay for health care...Back when papa could nod yes/no...Back when his body was flexible enough to sit up without terrible pain...Back when the family would visit every Sunday like clock work after church. That ended years ago...Now dad is in "C Bed, room 433" by the window...Alone big time...Alone in his room...The house has been sold to pay for bills and a new townhouse is at the old address... things change...time keeps going....alone most of the day without a loving family member... as the kids hurt too much when they visit....Dad now can only move his eyebrows in the center a wee bit when unbearable pain is felt while pressure sensitive wounds get cleaned and dressed....It is way too painful for the family to visit. Other than that nothing happens but... His body continues and now is one straight rigid mass of skin and bone. The flesh breaks down where moisture and pressure accumulate. He is there on the feeding tube kept alive.

The loving director of nurses knows him very well and visits daily, the nurse on duty( nursing him along with the other 5 or so patients) together with the minimum wage nurses aide wipes his red decomposing skin trying to not tear any more flesh. All Very, Very loving people...these are the real healers....the people who are with him each hour of every day as all his needs must be met by others. On occasion upon entering the room I will meet a younger nurses assistant who is crying her eyes out because their "Baby" is suffering.... and I also begin to cry....for her. There is a tangible living toll on everyone. Quality of life is what it is all about. I have special prayers and petitions for the hundreds of thousands of health care workers who at present are working in Intermediate Care, Skilled Nursing and SubAcute Care Hospital Settings with boundless unconditional love. For the most part these are Women and some men who with unconditional love burning within...these are the individuals who wil keep you alive after you get admitted. Your HMO or their representative will not be in the room helping you. Please include these direct care workers and their loved ones in your prayers. Next time you are in a health faciltiy notice all the nurses who will be wearing a little angel pin with pride. A Gold Star for all you nurses !

Meanwhile somewhere in the system... it is billable and the entire ordeal for some patients is funded. Not many winners....no winners anywhere really except the HMO and the hospital chain owners.... A tough story rewritten thousands of times every day here in the USA.

Now the feuding brother and sister were both crying and placing their hands on their fathers forehead and shoulders. He was going to expire in but a few more minutes. He could not phonate but you could read his lips. When asked what else they could do to comfort him he asked for a Dr. Pepper. His son now bursts into tears as his dad was known for always loving this soft drink.

I met with the Nurse and after a trip to the corner...with tender care a single tiny thickened drop of Dr. Pepper was given after great fanfare. The pop...the fiz...the feeling of the bubbles on his nose...the smell...feeling the cold bottle on his palm....old memories were awakened...and yes one tiny drop which vanished onto the end of his parched tongue tip, it never got past the middle of his tongue. You could tell he was really really enjoying his children and the memories. A very loving scene.

His daughter held him while his son prepared this simplest loving toast. That morning during his nap he exhaled his last breath, then he looked totally and completely relaxed, there was no more pain. All his muscles relaxed. After some prolonged silence the son gave me a hand shake then walked silently away, big sister gave me a hug while crying.....She said she was glad her daddy had gone home and was not suffering anymore. He died with his permanent feeding tube in place.... he looked very peaceful, no pain.... more peaceful than he had looked in a long long time.

I help the nurses aide position him for the morgue...and said a prayer.

I have seen dysphagia therapy change life for the better thousands of times. Each of us is in the end responsible for the health of ourselves and our loved ones. You and you alone have the obligation to let your loved ones know your wishes. Do not expect your HMO to rescue you from your physical difficulties. Do not expect your HMO to fund the therapy to retrain your swallow.

The chance of a speech pathologist attending to you and getting being paid a fair wage is mighty slim these days as there are just not enough qualified Speech Pathologists to keep up with the demand.

Your doctor will not put in an evaluation order and swallowing rehab if the facility cannot provide speech pathology services. The health care facility will get busted....Also 20 years ago the service was provided and billed by the person who actually did the work....today almost all speech pathology services provided in large facilities are contracted thru a intricate old boy system in addition to the entire 3rd party billing mess... I have been in situations where I get $55 for my professinal speech pathologist service before taxes and the hospital bills the patients trust account $656 ! It is legal for them to do that....did you know that ?

I placed my now empty warm coffee mug on the desk took a deep breath and walked down the hall ... introduced myself to her husband who looks like he himself can pass out at any moment...."would you like a cup of coffee ?" I ask.

" Are you here to fix her ?" he asks with hope in his voice.

Together he and I begin a long walk back down the hall towards the office and the course of events which will follow....there are many lessons to be learned loved ones. Take a moment and use your will power, your ability to focus and your unconditional love and enclose Terry Schiavo and all her loved ones with the White Light of the Holy Spirit. Also consider contacting the activity director at your local skilled facility and provide some civic volunteerism in the field of health care.
- posted by Samuel Bell @ 7:37 AM