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Clinical Question - What to say if you think a patient is dying?

NP   (874 Views 11 Comments)

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I recently had an elderly gentleman come into clinic.  He had never been to our clinic as he normally goes to the VA, but he wasn't up to waiting a long time or the long drive to the VA clinic.  His complaint was that he just had been feeling poorly for a long time, had lost his appetite, had lost a lot of weight, and felt he was declining.  He did not have any family or close friends.  I performed a PE and there was nothing wrong with him on exam.  He was not taking any medications.  I did order reasonable labs and tests.

I cared for my mother as she was declining and dying, and my gut screamed that this patient was dying.  My mother died a "natural" death at home and the hospice NP explained to me that the body starts to shut down, including not wanting to eat.  Trying to fight this can be very painful.  Indeed, my mother died peacefully at home several months later.  She didn't take any medications and had the paperwork to prohibit feeding tubes, etc.

The patient did not get the tests done and I never saw him again.  I did not tell him my gut suspicion, obviously, as I had nothing to back up my intuition.  Just wondered if anyone had faced this situation before and how they handled it.

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I see it every day and all day. I work in LTC as a consultant. Oh the patient has lost 20 0r 30 lbs this year. Let's start them on remeron, although they have dementia. Let's start them on remeron even though they are still over 200 lbs.

We do an enormous amount of bullmalerkey care in the US that hopefully will be stopped when we inevitably go single payer.

The patient is dying, and let's admit it.

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traumaRUs is a MSN, APRN and specializes in Nephrology, Cardiology, ER, ICU.

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If I'm seeing a pt for the first (and maybe only time), I usually refer back to their PCP hoping they have a relationship with them. 

However, I deal with chronically ill ESRD pts and yes even my young pts are VERY VERY sick. 

I have end of life (EOL) discussions all the time - many times the pts suspects there is another issue: they are losing weight, don't want to eat, maybe they have an additional pain or increased SOB. I am pretty blunt - do you want to try to find out what is going on? We can do a CXR, CT, colonoscopy, echo, etc., but if we find something can we fix it? Maybe not. I leave it up to the pt to decide. 

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Honestly, the current teaching is if a patient has a chronic, debilitating disease that will inevitably cause death, they should be referred to palliative care or hospice (depending on the timeline).  

Obviously in your case, without an actual diagnosis w/ a poor prognosis, this probably isn't indicated.  I don't think you should have an EOL discussion if a patient doesn't even have a diagnosis.  But if they do, by all means, broach the subject.  The sooner you do, the sooner they and their families can start processing and dealing with their own mortality.  

Edited by Dodongo

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30 minutes ago, Dodongo said:

Honestly, the current teaching is if a patient has a chronic, debilitating disease that will inevitably cause death, they should be referred to palliative care or hospice (depending on the timeline).  

Obviously in your case, without an actual diagnosis w/ a poor prognosis, this probably isn't indicated.  I don't think you should have an EOL discussion if a patient doesn't even have a diagnosis.  But if they do, by all means, broach the subject.  The sooner you do, the sooner they and their families can start processing and dealing with their own mortality.  

Forgive my ignorance - is there actually a diagnosis for the natural process of decline and death?  The reason I ask is this seems very rare now, as many elderly people are put on feeding tubes and so forth.  When I told my own doctor that my mother literally just died of natural causes at home, he was amazed and wanted all the details!  At a certain point the body will just shut down naturally.

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I have eol discussions with anyone who has a chronic illness who is in multiple stages of decline.  Sometimes they are heading that direction while others suddenly turn a corner and get a second breath.  The discussion is important because we to seldom take advantage of palliative care early enough in this country.  There's a level of honesty we need in this business.  Maybe not outright blunt but still important to share our gut feelings when warranted. Even when we think they're declinIng, we don't stop care. We treat their conditions as if tomorrow they will turn the corner.  If anything for their comfort.  If they no longer want a care or therapy, they will in my experience let you know or simply stop on their own.

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myoglobin is a ASN, BSN, MSN and specializes in ICU, trauma, neuro.

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I believe that this attitude emanates from a predominantly "materialistic" perspective. That is to say even the (minority?) of us who profess faith in religion be is Christianity, Islam, Judaism, Buddism, Wiccan or otherwise often "act' as if the body is all that there is.  If we truly believe that we have a soul then we understand that this physical life but one stage in our larger existence.  Having said that, as providers we do have an obligation to the "standard of care" and it sounds as if the client did not follow through with the diagnostic workup.  All you had at the time was a "gut" feeling and a keen observation that weight loss in elderly individuals is correlated with a high risk of mortality/morbidity. You didn't have anything with which to make a definitive diagnosis.  In the final analysis we are all dying a little bit each day we usually just don't know when the final credits for this physical reality are going to roll. 

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1 hour ago, myoglobin said:

I believe that this attitude emanates from a predominantly "materialistic" perspective. That is to say even the (minority?) of us who profess faith in religion be is Christianity, Islam, Judaism, Buddism, Wiccan or otherwise often "act' as if the body is all that there is.  If we truly believe that we have a soul then we understand that this physical life but one stage in our larger existence.  Having said that, as providers we do have an obligation to the "standard of care" and it sounds as if the client did not follow through with the diagnostic workup.  All you had at the time was a "gut" feeling and a keen observation that weight loss in elderly individuals is correlated with a high risk of mortality/morbidity. You didn't have anything with which to make a definitive diagnosis.  In the final analysis we are all dying a little bit each day we usually just don't know when the final credits for this physical reality are going to roll. 

What I was trying to ask is what to say if the tests are done, etc. and it appears that the patient is just dying a natural death.

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myoglobin is a ASN, BSN, MSN and specializes in ICU, trauma, neuro.

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This is somewhat of a philosophical question "what is a natural death?"  Even advanced cases of severe illness such as metastatic pancreatic or small cell lung cancer will occasionally go into long term remission.  Conversely, some people will die (or die quickly) of relatively less (seemingly) severe diseases such as influenza, bacterial infection, or various autoimmune conditions.  I would say that any approach should be personalized to the patient, their beliefs and tempered with as much compassion and relevant clinical information as possible.  Some people might be highly motivated with difficult illnesses to seek clinical trials for refractive illness while others like myself may have made themselves DNR as early as their 20's (I'm now 50).  

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NRSKarenRN is a BSN, RN and specializes in Vents, Telemetry, Home Care, Home infusion.

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ICD-10 code 799.3 "debility, unspecified is appropriate for use with terminally ill patients and those who decline further testing/treatment  --see diagnostic criteria for use AND referl to hospice program, if patient/family willing below. 
 

Debility Unspecified & Failure to Thrive: Common Hospice Diagnoses
 

Quote

While not always evident initially, upon further review the patient may have multiple risk factors which, when grouped together, meet hospice criteria.

Multiple risk factors may include sudden or progressive decline in:

·         nutritional intake,

·         function,

·         weight loss, and

·         mental function (disorientation, confusion or delirium).

Diagnostic studies or treatment may have been offered but declined, or not feasible.

Common objective hospice tools may be utilized to show a decline in: 

·         body mass index (BMI),

·         palliative performance scale,

·         mid-muscle area measurement,

·         functional assessment scale level,

·         and diagnostic studies including: ejection fraction, glomerular filtration rate, forced expiratory volume in 1 second, or blood studies.

Multiple borderline factors justify hospice admission ...

 

End of life discussion billing codes:

Reporting End-of-life Discussion Codes Correctly

  • 99497 – Advance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed) by the physician or other qualified health care professional (QHP); first 30 minutes, face-to-face with the patient, family member(s) and/or surrogate.
  • 99498 – Each additional 30 minutes (List separately in addition to code for primary procedure).

Above codes can be billed on multiple occasions that EOL discussions occur.

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NRSKarenRN is a BSN, RN and specializes in Vents, Telemetry, Home Care, Home infusion.

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How to initiate end of life discussions

 

Great opening line:

A Physician's Guide to Talking About End-of-Life Care

Quote

I know this is a very difficult time for you and your family. You have never been this sick before, and I know that it must be frightening to you. I want you to know that as bad as it is, we will deal with it together....

...There are several things that would be helpful for me to know. First, if you ever became so ill that you were unable to speak for yourself, who would you want to make decisions regarding your medical care?...

...We cannot predict exactly what medical treatment you might need at the end of your life. But it's important for me to know your thoughts about what type of medical care you would like to receive. How do you imagine spending your last days, weeks, and months?...

Discussing End-of-Life Care With Your Patients -- FPM - AAFP

End-of-Life Conversation Resources - Samaritan Hospice

The Conversation Project   has "Your Conversation Starter Kit" for patients/caregivers  as they state: When it comes to end-of-life care, talking matters.

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