Tag: alzheimer disease

Empathy and the End of Life

Empathy and the End of Life

Sometimes in our line of work, our patients do not get better.  Sometimes, despite our best efforts, they get worse.  And sometimes they die.  This month  has been a difficult one, as the majority of my hospital caseload has included patients at the end of life.  I have also had a graduate student working with me. Needless to say, we have experienced many “teachable moments” together this month and my twitter feed has been surprisingly supportive (see posts/retweets @CCCSLPNET).

What  I have learned/tried to teach is:

The  importance of  understanding the patient’s goals and perspective.

The importance of withholding  my personal feelings/judgements while providing the most accurate information I can to explain the patient’s deficits.

The importance of alternatives, knowing that if ‘Plan A’ does not meet the patient’s goals, there needs to be a ‘Plan B’, and possibly a ‘Plan C’.

The importance of teamwork

I am fortunate to work with a wonderful team of physicians, nurses, dietitians, case managers and a great Palliative Nurse Practitioner.  Through these collaborations I have learned that the Palliative Care conversation, that “first conversation” can happen early, before the end of life, to help clarify the patient’s goals for care in  order to mitigate unnecessary care and  avoid unwanted returns  to the hospital. I have learned to avoid blaming the patient for their informed choices by endeavoring to eliminate the  term “non-compliant” from my documentation.  If after education, the patient decides not to follow my recommendations, that is their choice.  They are not non-compliant.  They are choosing a different course of care based on their goals/values.  I need to respect that.

My biggest contribution to my team has been in providing education regarding what alternative nutrition (G tubes) can and cannot do for chronically ill patients at the end of life. Knowing that G tubes are contraindicated in patients over 75, with advanced dementia, advanced/chronic illness, low BMI, previous aspiration and UTI and that there is no evidence that tube feeding in patients with advanced dementia prolongs survival, prevents aspiration pneumonia, reduces the risk of pressures sores or infections, improves function or provides comfort has helped our team in its quest for compassionate care.

It is always an on-going process.  Each patient is different and it is never easy, but we strive. I remind myself that it is an honor and a privilege to  assist in the care of these patients at this stage of their life…. That helps.

For more information regarding Palliative Care and PEG tubes see:
Plonk Jr., WM. To PEG or Not to PEG. Practical Gastroenterology. July, 2005.  pp 18-31.  Great summary with multiple additional references.

About the Author

Lisa Yauch-Cadden was born and raised in the Detroit, Michigan area. She has a Bachelor of Science degree in Biology and a Master’s in Speech Language Pathology from the University of Michigan. She has worked as an SLP in nearly all facets of the field: skilled nursing facilities, home care, acute care, transitional care, medical offices and schools. Throughout her career as a therapist, manager and business owner, Lisa has never strayed from providing direct line service, including state of the art evaluations using FEES/FEESST and MBS. While she needs no accolades to do her job, she is deserving of many. Her tireless efforts to advance the best clinical practices in Speech Language Pathology have changed lives for her patients, her clinical fellows, and those of us lucky enough to work with her on a regular basis. Contact Lisa at lycslp@gmail.com.
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I have all the answers but nobody is asking me any questions

I have all the answers but nobody is asking me any questions

By Marguerite Mullaney

“I have all these answers but nobody is asking me any questions!”

The words echoed down the muggy hallway of an Alzheimer’s unit one hot August afternoon as I was hurrying along to see my next patient. They stopped me in mid step. Many times, a patient has managed to say the one thing I needed to hear at a particular turning point in my career. However, on this occasion, the message was shouted by somebody not on my list with no assigned minutes. His sentiment was so poignant and so common it could be a defining human characteristic; the need to share our expertise. It is a want that resonated deep within me and I took a few minutes, unbillable minutes finding the man and asking him a question.

We spend years becoming speech language pathologists. Studies are not enough to get the seal of approval. There are tests to pass, followed by a lengthy fellowship under the watchful eye of another person already judged to be an expert. Even certification and licensure is a process and requires constant education to renew yearly.

Yet, having completed the all basics and continuing to achieve certification and licensure yearly, I find nobody is asking me the question I so desperately want to answer. If I had a chance to answer one question for the next generation of SLP’s, I already know what I want to tell them. It would be the same message given to me by one of my graduate supervisors.

I was her first student. She was my first supervisor with an adult neurogenic population. We spent the autumn of 1987 driving each other crazy and getting in each other’s way. She wasn’t easy to learn from and I wasn’t particularly bright, but we bumbled along with a minimum of chaos. Then dysphagia struck!
Swallowing was a bit new to SLP in those days. Not every clinician was practicing it. I was lucky. My supervisor was confident enough to admit her limitations. She showed me how to research the information I needed to fill the gaps in my university education. There was no dysphagia course offered in my graduate program way back in the dark ages of the eighties. Filling in my theory short comings was as easy as reading; Logemann and Rosenbeck became my bedtime stories for the remainder of grad school.

But, practical application of that knowledge takes…PRACTICE. You need to do an awful lot of awful bedside evaluations before you get really good. You need to see an ocean on aspiration on MBS before you can anticipate the drowning. How does a supervisor get a new clinician from inexperience to expertise without killing anybody? The answer is not, ‘puree and pudding thick liquids for everybody.’
Have the clinician answer this question just as my supervisor made me answer for each of our dysphagia patients 23 years ago: “What swallowing felony has this patient committed to be condemned to puree and/or thickened liquids?”

Too many times lately, I’ve read reports which did not reflect deficits significant enough to justify diet modification. Then there’s an increasingly popular trend in acute care summaries which apply the safest diet for swallowing purposes without consideration of the ramifications to the whole patient. Expensive MBSs performed in which no aspiration was detected or the trials were less than five swallows or limited trials of nectar, honey, and puree or not one compensatory strategy attempted have been in over-abundance in recent years. Bedside evaluations are sent with statements identifying aspiration to the point you must read them twice to be certain imaging was not conducted. In my pursuit of additional information for some of the more outrageous claims, I have heard such depressing excuses as:

1) I stopped the MBS because I was afraid the patient would aspirate.
2) The patient was coughing so I changed him to pudding at bedside.
3) I didn’t try thin during the MBS because at the nursing home he was already on nectar so I started there.
4) There’s no speech at nursing homes so I put her on the safest diet; puree and pudding thick.
5) A suspected timing delay of the epiglottis might be present and could lead to aspiration even though none was apparent on the MBS but to be safe I recommend nectar thick liquids.
6) I didn’t want to recommend something they might aspirate and get sued.
I wish there was no number 6. Sadly, I think it is the driving force behind many of the recommendations. But, I would spread some words of caution to my peers, especially the younger ones. The only thing that avoids litigation is luck. The thing that wins litigation is expertise and documentation.
If you make a swallowing recommendation in isolation of the needs of whole patient to save him from aspiration pneumonia and he goes into renal failure…that’s a big problem.

If you base your recommendations on what you suspect their living arrangements are and you are wrong…that’s a big problem.

If you are practicing limited trial MBS’s and ending them early because you are afraid the patient will aspirate…PLEASE stop conducting MBS and get more education!

Before you alter another diet ask yourself, “What swallowing felony has this patient committed to be condemned to puree and/or thickened liquids?”

About the author

Marguerite Mullaney was born and raised in and around the Boston area. She continues to make her home in the Commonweath and rarely finds it necessary to travel beyond the 128 belt. Her undergraduate program was completed at Bridgewater State College and she attended Northeastern University for graduate school. Adult neurological disorders has been the primary focus of her clinical practice. Her vast knowledge of the field, thoughtful, pragmatic approach and incredible sense of humor have enlightened and inspired her patients, staff and colleagues for over 20 years.

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