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by Drew Rosielle

The American Society of Clinical Oncology annual meeting, besides being a feast for the pharmaceutical business news pages (google 'ASCO' and most of the hits will be about how announcement X affected drug company Y's stock), is also one of the premiere platforms for publishing original palliative-oncology research. So every year I try to at least scan the abstracts to see what's happening, and I figure I might as well blog about it. It's tough to analyze abstracts, so I'll mostly just be summarizing ones that I think will be of interest to hospice and palliative care folks. I imagine I've missed some good ones, please leave a link in the comments if I have! My major observations on this year's abstracts is that there was very little about symptom management compared to years past, except for neuropathies.

(Past ASCO reviews here - 2008, 2017 - Ed.)

Fatigue/Nutrition

• A negative phase 2 study of a walking intervention for fatigue in patients with breast cancer
• A look at 10-year trends in TPN use in cancer patients (use is slightly declining, as are costs, and involvement of palliative care is increasing)
• Parenteral nutrition once again fails to show any benefit over oral feeding for cancer cachexia (and in fact suggested harm)
• A nice study looking at the determinants of long-term fatigue in patients with treated ovarian cancer
• Perhaps the microbiome influences cancer-related fatigue?

• Code status, race, and palliative care involvement at a single institution in Texas
• A small study that showed that training oncologists in communication skills (it's implied that it's with Vitaltalk methods, although that's not exactly clear from the abstract) does increase the use of those skills in real life, but did not increase the amount of goals of care conversations, etc. 
• A project to disseminate palliative care knowledge in multiple Sub-Saharan African countries
• A fascinating prospective study looking at dis-/concordance between patient and oncologist perception of care goals over time. Another abstract from this study showed that concordance did seem to matter at least for patients with 'aggressive' goals (they got what they wanted if the oncologist understood that goal). I hope they write this up for full-publication, as I want to know more. 

• Apparently palliative celiac plexus radiosurgery is a thing
• More frustratingly inconclusive data about the 'Scrambler' device for chemo neuropathy (it was randomized against TENS, unclear if anyone was blinded, results were barely positive for Scrambler). Perhaps I'm just totally ignorant, but I don't understand why no one can do a double-blinded sham-controlled study of the technology. Actually at this point I'm just assuming because it's not effective and that's why, but I don't really know. [Late edit - hey, I guessed right, a sham-controlled study showed Scrambler probably doesn't help, and you can sense the disbelief and desperation in this curiously-written abstract.]
• Omega-6 fatty acids reduced pain more than O-3 fatty acids in breast cancer survivors in a randomized & blinded (but no placebo-arm) study. Interesting, but I just can't imagine that we are ready to study this without a placebo arm yet!
• An uncontrolled mindfulness study on chronic cancer pain shows promise
• A look at the natural history of chronic pain in survivors of childhood cancers
• Low-quality, retrospective look at cannabis and QOL/symptoms in patients with cancer
• Investigations into cryotherapy to prevent chemo neuropathy stumble along
• RCT of a novel superoxide dismutase mimetic to prevent radiation mucositis in Head and Neck cancer patients with promising results

• Claims and SEER database study suggesting that earlier palliative care involvement in pancreatic cancer reduces some costs. 
• Patients in Medicare managed care organizations use hospice a little more than fee for service Medicare patients 
• Barriers to palliative care involvement in patients receiving stem cell transplants, including this data point, which is something I've personally wondered about a lot: "Higher sense of ownership over patients’ PC issues (β = -0.36, P < 0.001) was associated with a more negative attitude towards PC [by hematologists]."  
• EOL spending was higher in ACO patients vs non-ACO patients.  
• A retrospective study which compares many outcomes in patients who receive early palliative care inpatient vs not. The title abstract highlights survival (which was a bit longer in the palliative group). Please do not quote this abstract however to claim that PC prolongs survival in patients with cancer: this is messy retrospective data, and it's not even clear from the abstract whether the survival difference was in univariate or multivariate analysis (PC patients, eg, were younger, more likely to be discharged home, etc.). Similarly, a Canadian study looked at early palliative care consultation in pancreatic cancer (retrospectively) and apparently showed that late but not early palliative consultation was associated with longer survival. The same study also showed that having metastatic disease at the time of diagnosis was also associated with longer survival, so I'm not going to make much of any of this.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle. For more Pallimed posts by Drew click here.

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When asked about her wishes, Sue told me that her grandma was a registered nurse and never wanted to have tube feeds and wished to go naturally without tubes or heroic efforts when the time came. She had seen too many people suffer with unnecessary care. Jennie nodded in agreement and she and I signed the POLST form that makes these wishes an order.  There was hushed mention of a distant son who had not seen her in the past few years, but Jennie said she would inform him as well. Leela started home hospice after obtaining consents from the daughter.

When Surrogates Disagree

Two weeks later, an angry son called hospice and asked his mother to be taken off the hospice, he called 911 and demanded her to be taken to ER, he wanted her hydrated, treated with antibiotics and possibly started on PEG tube feeds, as he felt that this amounted to starving her.
He still wanted no CPR or intubation, but did not agree with hospice philosophy.

The patient was taken off hospice and after several family meetings a PEG tube was placed and she was accepted in a nursing home. Medicare would now pay for her room and board due to the newly placed G tube.

Decisions Undone

In America, surrogates often override the decision of an incapacitated relative, regarding end of life care. Various reasons involved include religious beliefs, personality conflicts, misunderstandings and financial reasons.

POLST is meant to be a legal document to help convert a patients known wishes into physician orders. However, families make decision collectively and may influence the behavior of the surrogate.  Sometimes that decision may go against the wishes of the patient.

The Faults in our System

It is an outrage that  our healthcare system pays for doing more to the patient than doing something for the patient that the patient actually wished for! Medicare will not cover the stay of a dying patient in a nursing home but will cover the stay if they have a procedure  like PEG tube that automatically qualifies them for a hundred days in the nursing home.

 

Leela passed away few months after PEG tube feeds were started, she developed diarrhea after being in the nursing home, where she died with decubitus ulcers and sepsis finally. At least she didn't die hungry.

*Names and details have been changed to protect the privacy of patients and family.

Vikranta Sharma is a hospice medical director at the Visiting Nurse Association Health Group in New Jersey.  

Join us this week on Wednesday, 9pm EST, 6pm PST for #hpm chat for a discussion on this topic and more!

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 3/16/2016 - 9p ET/ 6p PT
Host: Vikranta Sharma MD Follow her on Twitter @vikranta_sharma

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Helen Kao at Geripal recently wrote a thoughtful post which highlights some of the flaws in the California POLST form. It's worth a read and I agree with her comments.  (And even though I use "POLST" here, I agree with her thoughts on using "POST" instead.)

For jurisdictions which are considering the establishment of POLST, it is important to consider the experience of other states as new forms are designed and legislation is drafted. I live in one of the many states which is in the process of developing a program. In spite of the weaknesses of forms currently in use in other places, PO(L)ST/MO(L)ST remains a very helpful tool with new research continuing to back its utility.  For instance, consider a recent study published in the Journal of the American Geriatrics Society which demonstrated high consistency between treatments provided to nursing facility residents and orders recorded on POLST forms. The study found that overall, POLST orders were consistent with treatments provided 94% of the time. Consistency rates were especially high for resuscitation orders. Consistency rates were slightly lower for antibiotic use and much more modest for feeding tubes use. 

Reasons for inconsistencies between orders and treatments should be evaluated further.  It's unclear that improving the form itself would reduce these inconsistencies.  Patients' preferences sometimes change and sometimes patients want their surrogate to have the leeway to change orders after the patient loses capacity (perhaps using a "best interest" standard of decision-making at that time rather than a pure "substituted judgment" standard). 

I hope that my state will "get it right the first time" taking into account the experiences of others. However I know that it is impossible to get it completely right the first time. Therefore, I hope that any legislation approved will include a process for modification of the forms which does not require the wheel to be reinvented down the road.

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• Greater ICU use in the last 6 months of life
• Larger size, and
• For-profit ownership vs government ownership

Teno JM, Mitchell SL, Gozalo PL, Dosa D, Hsu A, Intrator O, & Mor V (2010). Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA : the journal of the American Medical Association, 303 (6), 544-50 PMID: 20145231