Which of the following medical tests or procedures do physicians commonly recommend, but state they would never accept themselves?
(1) Cardiac catheterization
(2) Screening colonoscopy
(3) Feeding tube placement
(4) PSA screening for prostate cancer
(5) Hip replacement surgery
Answer appears at the post’s end.
Last week, I was asked by a primary care physician to place a feeding tube in an NNHP, a nonagenarian nursing home patient. The patient had a panoply of active medical issues, and was at the end of life. The feeding tube was advised because the patient’s swallowing function was impaired and he was, therefore, at risk for pneumonia if he ate. These swallowing evaluations are generally performed by speech pathologists, whom I have found to be dedicated and competent professionals. As an aside, they often uncover swallowing defects that suggest that eating regular food may be unsafe, even though I suspect that these ‘defects’ were present for several years. Somehow, these patients ate regular food and survived.
As the patient was not capable of providing informed consent, I contacted the patient’s legal guardian, who is his grandson and a physician. While I was hoping that he would decline the tube and opt for comfort care, he was adamant that the tube be placed. I did so on the following day. Yesterday, a day after the tube was placed, he died, not from a complication of the procedure, but because he had reached the end of his life.
In 20 years, I’ve place over a hundred feeding tubes, primarily in elderly and demented individudals. In most of these cases, I serve as a technician. I am not consulted for my advice on whether a feeding tube is in a patient’s interest, but am asked to insert one after the decision has already been made. More than any other gastro procedure I perform, placing these tubes, called PEGs by physicians, is the most troubling. There is no question that gastroenterologists like me are placing more of these tubes than are medically necessary. Over the past few years, several medical papers have documented that providing tube nutrition for patients at the end of life, or with advanced dementia, provides no benefit. It does not prolong or improve life for many of these patients. Why, then, do we do it so often?
- We do it because primary care physicians ask us to do it.
- We do it because families believe that withholding nutrition means they would be starving granny.
- We do it because nursing homes don’t have the time or manpower to feed patients.
- We do it because it has become an expected medical recommendation when patients cannot adequately feed themselves.
There is a theological aspect to this issue. Traditional Jewish law mandates nutrition, even by feeding tube, in all instances, with rare and specific exceptions. While I have enormous respect for these religious laws and precepts, I cannot always reconcile them with my own feelings as a physician vis-a-vis individual patients. Judaism teaches that every moment of life has infinite value. I respect this unshakeable conviction in a world with elastic values and slippery slopes. While many advocate changing the definition of death for various reasons, Judaism stands as a bulwark against ethical erosion. Yet, I am personally torn when I am asked to place a feeding tube when I cannot appreciate the benefit that will result from this intervention.
The Catholic view on this issue is similar. U.S Bishops recently announced feeding tube policies, which obligate feeding in nearly every individual, including those in a permanent vegetative state, with rare exceptions. This religious directive could conflict with a patient's stated end of life wishes.
There is a double standard at play here. I cannot count how many physicians have told me they would never have a PEG tube personally, yet they prescribe it regularly for their own patients. What oath did we all take? Was it the Hypocritic Oath?
If you've read this far, then you don't need an answer key to the multiple choice question above.
Great post, thanks so much. I completely agree with you and think more physicians should be talking and writing about this.
ReplyDeleteI completely agree with your points, and would expand it to all kinds of care.
ReplyDeleteAs a society, we are unaccepting of death, even when it is of natural causes. It has been my impression and experience that that this is not a worldwide phenomenon, but rather a mostly American issue, despite the predominance of religious faith throughout the world.
I would like to think that medicine is about prolonging useful and enjoyable life, and preventing untoward death. It saddens me that medicine is in many forms focused on preventing the natural end of life.
For example, my mother was diagnosed with stage IVB pancreatic cancer at age 74, first appearing with a massive pulmonary embolus. After she shook the embolus off, she started on chemo which data showed had no survival benefit, though the oncologist said it would improve her quality of life. I saw no evidence of that, as the massive tumor death that the chemo caused led to two more pulmonary embolisms. Never was there a discussion at the outset of just not treating the thing, which I would have been in support of.
I think we do that same at the other extreme with extreme prematurity, spending massive sums of money to keep babies alive that had no natural chance of life, even when we know that most will still die, and most of those that survive will not have intact survival.
Good post.
ReplyDeleteI don't think a physician is necessarily being hypocritical in performing PEGs when he/she wouldn't get one personally. Even if you believe in "vitalism", or life for life's sake, no one is obliged to do everything he/she can to ensure living every last second one can. For instance, it is noble to become a policeman, or firefighter, or a member of the Armed Services. These professions reduce the chance of living the longest life possible, yet they are honored and ethical professions.
Anyway, I would accept a G-tube if I had a neurological deficit that has a reasonable chance to improve. This past year I have had the distinct pleasure of removing G-tubes from ambulatory patients who no longer needed them -- a happy time indeed!
But I do everything possible to avoid putting them in terminal patients, which is one reason my practice is almost entirely with outpatients these days.
You raise the key point----the referring doctors expect endoscopists to place PEG's without question. It isn't a request for an opinion; they just want the damn tube placed so they can ship the demented patient off to the SNF. It's a demeaning, demoralizing situation for you guys, relegated as you are to mere technician. But you don't want to alienate yourself from the PCP. And that's why I think there needs to be some algorith, mandated by state/federal law, that determines eligibility for feeding tubes. Of course that will never happen. Moral issues typically get swept under the rug in medicine. At least until it becomes politically beneficial to exploit a case (see terry schiavo).
ReplyDeleteAll comments appreciated.
ReplyDelete@Christina, thanks for comment and best of luck with your medical studies. How many more years to go?
@Academicobgyn, I am sorry to hear of your Mom’s tragic collision with futile medical care. I guess that even a doctor in the family can’t restrain this runaway train. I’m sure that you confront many agonizing choices in your profession, as you suggest.
@Bailey, I agree with you that it is much more satisfying to remove a PEG than it is to place one.
@Buckeye, the non-academic rust belt surgeon, agree that politics and medical ethics can become tangled, which they shouldn’t. Wary of creating a legal algorithm for PEGs, as wouldn’t want to create a precedent of legislating medical care. You surgical guys are called in by us to assist with PEGs, making you more of a technician than even we GIs are!
"Another good and provocative blog and I agree completely. Feeding tubes
ReplyDeleteshould not be placed in vegetative people who are at the end of their lives.
Babies and acute illness...yes. Granny with a stroke and no cognition...no!
"
Toni Brayer, MD
I am sure glad none of you will ever care for me or mine. Food and hydration are not extraordinary care.
ReplyDeleteMy father suffered from Parkinson's. Fully 6 months before he died, he lost his ability to swallow. A feeding tube was place. That tube allowed him and his family very precious time together that he we would not have had if we had done as you would have had us do.
There is nothing loving or caring about starving or dehydrating a patient to death. It may be more work for health care personnel but aren't you being paid to do your job? Your misconceptions about compassion and caring are frightening to those of us who someday may need to be in a nursing home or hospital. If you don't like caring for the sick and dying, get out of the situation you are in. Killing patients is not the answer. Furthermore, "comfort care" and "futile care" historically did not even suggest the withholding of food and water. Unfortunantelly the terms have been redefined by those who would kill us!
@anonymous, please note that the patient described in the post died within a day of placement of the feeding tube, a different scenario than you describe with your dad. In my view, supported by colleagues and commenters above, is that these tubes are often placed at the wrong times and for the wrong reasons.
ReplyDeletea court appointed guardian who took and and wiped out my mothers bank accounts and more along with my husband being an atty in a different part of the state hurt overdruged hypothermia broken arm and more the guardian her atty and judge in a corupt system never let us take over and then in a hospital from over drug hypothermia strapped in a wheel poor food causing poor nutrition this guardian had the right to put in a feeding peg tube which caused an infection and then waited over a month later being kept thrown 9 different places put the peg tube in 2 more times and that night she cried to me how sick she was and went into icu and two weeks later died ..it was so cruel then the judge which i have cds of court hearing which were lies and heartbraking for my mom they called the nursing to be like a concentration camp.. we now winning 3 different nursing home lawsuits but the guardian is the one who blocked the family and we were so close and especially to my sweetest loving mom in the world miss her and heartbroken for her last year of life crying to go home 200 miles from where this happen not being anyone there she knew the feeding i feel killed her
ReplyDeleteArticle from today's New York Times detailing what many of us have suspected for some time. The value of feeding tubes is rather limited. See http://nyti.ms/cRFOJU
ReplyDeleteI have a brother, a healthy 44 year old man, who had squamous cell tonsillar carcinoma, who had a feeding tube placed in his stomach, had been given no warning of the complications regarding risk of the tube prior to having it installed. Thankfully and ironically today, he is cancer free, but his life span is limited to whatever life span he has on a feeding tube, his stomach was damaged and no longer processes food as those who 'eat' know food. It's tragic that the feeding tube option is one that has become part of the treatment regime so often, that no one questions the choice or treats the choice as if there is a choice. It's tragic that there were no options given for him and many others who suffer the fatal effects of that treatment as part of the 'risk factor'. There needs to be a subsection in the Hypocratic Oath, that reads, 'The Humanistic Oath'. My brother has no life now, being attached to a tube that rules his life 24/7. The fact that this option is being used on so many people, especially those people who are unaware of the consequences(you may never eat food again or you may die from it being in there), those people who are living in nursing homes, etc., having the tubes installed without the use of an endoscope, is not a lifesaving act, but just another way to keep an industry thriving. My heart goes out to Jill and her family and all others who suffer this kind of tragedy, may things change someday soon!
ReplyDeleteThank you, dear physician for your candid post.
Can a legal guardian (not a family member) request to stop a feeding tube for a patient in a nursing home in Maryland?
ReplyDeleteThis was a very informative and thought out discussion. I myself just returned from having this procedure done to a close relative when in my heart I believe that the nursing home and nursing home doctor on staff had their own motives for this and refused to even try to feed my relative orally, I felt forced to do this and I completely torn regarding this.
ReplyDeleteTo the anonymous commenter above, I hope you learned something from your experience.
ReplyDeleteDoctor Kirsch,
ReplyDeleteMy father has recurrent esophageal cancer and a wall stent has been placed in his esophagus to help him eat, the problem- he now has aspiration pneumonia. Although recovering from this serious condition, his oncologist has decided that a feeding tube is the best option for my really scared dad, who wishes he didn't have to get feeding tube. We were told my father is not a candidate for surgery and chemotherapy is most likely not to work, since the cancer recurred. I have to make this important decision for my dad. He's otherwise in good health except for malnourishment. Please help this daughter. I'm not asking you to tell me what to decide, I just need some advise from someone who feels strongly about this issue and has to do this kind of procedure on people.
I feel your agony from your comment. I am sorry to hear of your dad's situation. As you point out, I cannot offer any medical advice as I am not your dad's doctor. I have great respect for patient autonomy where the right to refuse treatment is fundamental. If a patient is capable (competent), then the issue is easily decided by the individual. In the case of a medial POA, my view is that the POA should exercise substituted judgement, that is to make the decision that the patient would if he were capable. Just today I was asked to see a patient to place a feeding tube. The patient, who is competent, refused his doctor's recommendation. In your own situation, the facts suggest that a meeting between the medical professionals and the family may be most helpful. I suspect that a decision can be achieved that you and your dad will be at peace with. Perhaps, other readers will offer their thoughts to you.
ReplyDelete"We do it because families believe that withholding nutrition means they would be starving granny."
ReplyDelete----
I find that comment cold hearted. Typical of doctors.
My dad has MS and is currently going through Dysphagia. He hardly can eat anything anymore and is skin and bones. The stupid doctor talked him out of a feeding tube... her reasoning is that he can still aspirate even with a feeding tube.
She just left out the part of dieing from lack of food/nutrition or medicine. That will be what ends up killing him, not the Pneumonia. All thanks do doctors like this who don't think.
She also claimed that Pneumonia is a perfectly natural way to die. What BS. There is nothing pleasant about dieing like that. I may end up losing my dad due to her logic.
She isn't the one who sits at the table with him trying to eat a little and him basically choking his food back out. I have cried so much over this.
Tim,
ReplyDeleteI am sorry to hear about your Dad's situation and that you found my phrasing to be cold. While not commenting on your Dad, it is a fact that there are too many feeding tubes being placed. In addition, there is accumulated research supporting that feeding patients with advanced physical and mental disease does not relieve any suffering and may even worsen outcome. These are tough situations for all concerned. Thoughtful discussion between the patient, family and physician about nutritional options is essential. I advocate feeding tubes and other treatments when it is in the patient's best interest. Feeding tubes do not always meet this standard. Thanks for commenting. I wish you and your family well.
I have an 82 year MS patient (friend of the family) in remission for decades but wheelchair bound and with skin integrity issues prior to recent stroke (5 months ago). She developed mild confusion (couldn't remember phone number or year), dysphagia, aspiration pneumonia and UTI sepsis diagnosed upon hospitalization. The assisted nursing care facility called to let us know she was deteriorating and needed hospice care, never got her medical attention for her pneumonia and sepsis and just watched as she became mildly confused, short of breath and coughing. They gave her suction and oxygen without a doctor's order. Now she has responded wonderfully to her treatment for pneumonia and sepsis in just 2 days and again they have given us the option of hospice or skilled nursing care and feeding tube. Just 3 weeks ago, she was her usual self, alert, sprite and living. So, why wouldn't we step in and continue nutrition. How do the doctors know she has less than 6 months to live- Are they God? Why was it ok for her to die of pneumonia and sepsis because she has dysphagia and doesn't know the year (due to sepsis or what I suspect is malnutrition). Is this humane treatment? I'm afraid of what our medical field has become. I'm hoping you agree that severe physical disability and age are not contraindications for nutrition in a dysphagic patient.
ReplyDelete