Pallimed: Case Conferences

Wayne, sorry for the late reply to your comment. ...

noreply@blogger.com (Christian Sinclair, MD) — Wed, 21 Oct 2009 04:26:32 +0000

Wayne, sorry for the late reply to your comment. Thanks for the link on the book. I will pass it on to the Child Teen Specialist I work with and I bet other people will too.

I've just come across Pallimed through alink from ...

noreply@blogger.com (Wayne Naylor) — Wed, 14 Oct 2009 20:05:19 +0000

I've just come across Pallimed through alink from Medscape and it looks like a really great blog!

My wife is a primary school teacher and we have recently be talking about educating children about death and dying through school programmes. I know this has been done by some hospices, most notably St Christophers in the UK. In situations like the case noted here, it would be great if kids had some idea of what death is about, but our society is so reluctent to talk about it, it just makes the situation so much more difficult.

At a recent palliative and hospice care conference in Australia I met the author of a fairly new book written for children and designed to introduce concepts of death, loss and grief. My wife thought it was great and is considering how she could use it in her class of 6-7 year olds. It is called Jelly Bean's Secret by Molly Carlile (you can see it here on Molly's blog - http://www.mollycarlile.com/JellyBeansSecret.pdf). Just thought if anyone is interested or works with children this might be a good resource.

Wayne :o)

Previous commenter, I had to delete your comment...

noreply@blogger.com (Christian Sinclair, MD) — Fri, 22 May 2009 03:57:49 +0000

Previous commenter,

I had to delete your comment because it had protected health information. I hope you understand. I would encourage you to continue commenting as you offer great insights. Try to de-identify or change facts (and state as much) so as to best de-identify if you do have a story that may have relevance.

Thanks for commenting on your experience Mayopallm...

noreply@blogger.com (Christian Sinclair, MD) — Thu, 21 May 2009 03:16:03 +0000

Thanks for commenting on your experience Mayopallmedfellow.

I have yet to prescribe it and I keep looking for situations where I think it will be an issue. It is a bit of a bummer since they really worked closely with hospices to get this drug right for our field. It is not like we get a lot of focused attention for med development in palliative care!

Thanks for sharing. Our Palliative Medicine Consu...

noreply@blogger.com (mayopallmedfellow) — Wed, 20 May 2009 16:23:05 +0000

Thanks for sharing. Our Palliative Medicine Consultative Service has used it a few times although we currently don't have any regulations on who can prescribe it. One patient was using about 900 OME between a dilaudid continuous infusion and oral medications and responded after 2 doses. The other responded after only one. The cost for each dose to our institution is about $60.

Thanks for the comments Sharon. Over the past few...

noreply@blogger.com (Christian Sinclair, MD) — Sun, 12 Apr 2009 21:16:00 +0000

Thanks for the comments Sharon. Over the past few years I think I am finding less families considering taking a loved one home, even if that is the desired wish of patient and family. There is a concern about being too difficult to give all the proper care at home. I don't know how to measure this trend on a larger scale, but just my experience.

I get excited about cases like this because of all the creative solutions and goodwill that can form as a result of fulfilling someone's dying wish.

thanks for the comment Cynthia. I completely agre...

noreply@blogger.com (Christian Sinclair, MD) — Sat, 11 Apr 2009 18:00:00 +0000

thanks for the comment Cynthia. I completely agree with you about the focus needed on the Arts & Humanities. I heard a lecture by Robert Potter who was a key force in the Bioethics movement in the 90's. He noted that the technological fascinations of medicine can be traced back to a reading of the Flexner Report. The Flexner Report was comissioned by the AMA in the early 1900's to unify and standardize all medical education. There is a vital statement about the need to have science as the basis for medicine which apparently was often quoted but the second part of the statement is that medicine is not science alone but the balance with the humanities.

If you have not seen the Arts & Humanities section of Pallimed, i would encourage you to click on the Arts button at the top of the Pallimed pages or go to arts.pallimed.org It is a weekly blog and was created expressly for the reason you wrote about.

As far as incorporating more culture into the cases series, I am using material from the University of Pittsburgh for the cases blog so I don't get any input into topics. But I guess I am the editor of the Cases blog so I could do whatever I wanted and publish my own!

This is a very innovative case and use of music th...

noreply@blogger.com (Cynthia) — Sat, 11 Apr 2009 10:11:00 +0000

This is a very innovative case and use of music therapy. We often forget about the humanities and arts in the setting of a life threatening illness, thus forgetting that the patient is actually a person. We also don't touch upon "culture" much. Would love to see more cultural issues in cases. Thank you.

I have to say, of all the case studies I have read...

noreply@blogger.com (sharonccurn) — Thu, 09 Apr 2009 18:46:00 +0000

I have to say, of all the case studies I have read here on Pallimed, this one hits home the hardest for me. Not being able to fulfill a patient's final wishes is frustrating and demoralizing. This case study should be a shining star example of what we can do for a patient and their family, not an exception to the rule. Our medicare system is - well, crazy. I understand about "malpractice" in a situation such as this, but really, is it any less of a liability having a tubed patient "fly" for CT scans, etc.? The patient's final wishes are to be at home, not to die in the hospital. Not taking the risk of "bad things" happening by sending a patient home who is on a vent seems a moral issue when you consider that "bad things" happen in controlled environments, like the CICU, all the time. I know, I've worked there just short of forever. Thank you for the gems to chew on.

I really liked this case when I first read it as w...

noreply@blogger.com (Christian Sinclair, MD) — Sat, 17 Jan 2009 03:25:00 +0000

I really liked this case when I first read it as well. It demonstrates a human to human connection and a complete exploration of all options. \

Another important component it the 'stepping up to the plate' component. Many medical professionals stop short of practicing all of their fully licensed skills, because that is someone else's job/role, etc. But when that job or role is not being fulfilled it is not always right to just turn your back and walk away.

Something that is not mentioned but would need to be a consideration is the discussion about the scope of malpractice coverage. The family may really appreciate you when things are going right, but if something went wrong, it would be very easy to draw up a case with lots of evidence from your peers saying they would have no part in this.

Thanks for your comments Emily! Keep em coming.

Wow, good case. I'm an ICU nurse and I think if I...

noreply@blogger.com (Emily) — Fri, 16 Jan 2009 20:31:00 +0000

Wow, good case. I'm an ICU nurse and I think if I mentioned this case to most of our docs they wouldn't even believe it. Sad to say I can't really see this happening in our hospital. I feel that most times our doctors (especially pulmonologists) are glad to wash their hands of a case once the patient doesn't want to be kept alive any longer. I'm glad that this was made possible for this patient & their family.

I actually quoted this case in a lecture today on ...

noreply@blogger.com (Christian Sinclair, MD) — Thu, 15 Jan 2009 20:34:00 +0000

I actually quoted this case in a lecture today on COPD and treatment of dyspnea. I am continually impressed what a energetic music therapist can add to a therapeutic regimen.

Thanks for the comment.

This is such an uplifting and wonderful case study...

noreply@blogger.com (Jessica Knapp) — Mon, 12 Jan 2009 23:46:00 +0000

This is such an uplifting and wonderful case study to read. I love that the singing even helped her exercise her lungs. Thank you for the post.

Thanks for your comments- I couldn't agree more. A...

noreply@blogger.com (Anonymous) — Mon, 29 Sep 2008 15:44:00 +0000

Thanks for your comments- I couldn't agree more. As a hospitalist, care for frail geriatric patients is a mainstay of my job, and helping patients and families make the transition from reflex hospitalization/aggressive procedures to comfort based care when indicated is made SO much more difficult by the complexities of Medicare and nursing homes. The DC Dept of Health today rendered a verdict to this particular nursing facility and my patient's family that yes, DC Law does preclude admission of a patient to an assisted living or independent living facility who has a stage III or IV sacral decub even if the person is in Hospice care and has a family paid caregiver in place 24 hours a day. They say that long term care in their SNF is the only appropriate place, even though there is no further care outside of wet- dry dressing changes for the wound, done just for comfort. I don't know if the DOH is actually going to enforce this, but the nursing home has the answer it wants (to place her in their snf instead of her own independent apartment). I think most other care facilities are more reasonable and look the other way, but I can see this issue affecting other patients as well. I hope our local hospice organizations will tackle this one. This is a terrific web sight by the way, and thanks for your input.

Well the issue for Skilled care in a nursing facil...

noreply@blogger.com (Christian Sinclair, MD) — Sun, 28 Sep 2008 18:43:00 +0000

Well the issue for Skilled care in a nursing facility versus Hospice in a nursing facility for a dying patient is a tough one and the finances of the matter play a big role in it for facility and for family/patient.

When you go skilled the patient/family have less out of pocket expenses since room and board is covered ($150-250/day). But at the same time everyone acts like the patient is going to do rehab, when they likely cannot or do not want to which reinforces the 'maybe he will get better, so we don't have to worry/think about this dying stuff' feelings of staff, patient, and family.

This is a real tough issue that I rarely see talked about in print in the hospice world, but ask any hospice or palliative care team and they will tell you it is a huge bureaucratic nightmare.

Yes, and thanks. I may be a skeptic, but I believe...

noreply@blogger.com (Anonymous) — Sun, 28 Sep 2008 11:05:00 +0000

Yes, and thanks. I may be a skeptic, but I believe their refusal of her into their assisted living is because they will receive more medicare reimbursement if she comes there under snf than being cared for by family-paid caregiver in assisted living for the few weeks she has left.

Anon, Your bring up a situation that may becoming ...

noreply@blogger.com (Christian Sinclair, MD) — Sat, 27 Sep 2008 03:13:00 +0000

Anon,

Your bring up a situation that may becoming more and more common. Besides hospitals and emergency rooms, there is a right of refusal with other medical care facilities (nursing homes, long term acute care hospitals, assisted living facilities, etc.). Those facilities don't face EMTALA laws that require them to treat or care for anyone they do not want to care for.

Often they may refuse under the mischaracterization of local/regional laws/rules, etc. But to my knowledge no state makes admission criteria based on existing medical issues including wounds. The interesting thing is wounds may be the main reason some people need more intensive nursing support in a nursing facility then can be done at home.

The fear of wounds comes from the demerits from the state that can bring fines, sanctions, and possible closings of nursing homes so you can somewhat understand where the refusal might seem justified on their part to continue their current standard care. But none of this has an air of common sense especially when dealing with preexisting wounds.

I would strongly encourage you to look into hospice inpatient facilities in your area, or maybe work together with some of your local hospice agencies to identify nursing facilities that are more likely to look at the whole picture.

I hope this was a helpful reply.

I'm a hospitalist with a question regarding autono...

noreply@blogger.com (Anonymous) — Thu, 25 Sep 2008 21:10:00 +0000

I'm a hospitalist with a question regarding autonomy- I hope this is the appropriate place to ask- but I am encountering problems discharging patients who want to go home to independent living or assisted living facilities to die with 24 hour cargivers and hospice in place, families supportive of hospice/comfort based care, yet the facilities, citing District of Columbia law, refuse to allow it because patients with stage III or IV sacral decubs are not allowed in their facilities. I told them I was sure there was an exemption for hospice patients, but they are asking me to prove it! Has anyone out there dealt with this or similar issues? They are saying I must place her in their skilled nursing facility, and she is frightened of going back there, requesting nothing but going home. Thanks for any input.

This issue of patient autonomy, and even allowing ...

noreply@blogger.com (Christian Sinclair, MD) — Sat, 20 Sep 2008 19:23:00 +0000

This issue of patient autonomy, and even allowing a patient to make a very bad* decision is very stressful to most hospice and palliative care teams I know of. It often takes lots of conversations before a team accepts that in the patient's POV going home to a bad environment may be the best decision.

It is awlays helpful to explore motivations for what are considered to be bad decisions. That exploration needs a foundation of trust and a hopefully an established relationship if one is to get any real answers about motivation.

*in others point of view

When I was a fellow I remember being shocked a few...

noreply@blogger.com (Drew Rosielle MD) — Fri, 19 Sep 2008 14:15:00 +0000

When I was a fellow I remember being shocked a few times realizing that the patient in front of me was not grief-stricken/miserable because I told them they were dying and time was short but because I told them they can't go home for whatever reason.

There's an interesting ethics discussion about this topic (allowing dying people to go home even when it's very unsafe) in Postgrad Med J here:

http://pmj.bmj.com/cgi/content/abstract/83/984/643

[p.s. by 'underprescribing' i meant using a non-mo...

noreply@blogger.com (Drew Rosielle MD) — Wed, 23 Jul 2008 16:52:00 +0000

[p.s. by 'underprescribing' i meant using a non-morphine opioid, not underdosing it.]

Dr. Sacks - great case. What I found notable abou...

noreply@blogger.com (Drew Rosielle MD) — Wed, 23 Jul 2008 16:51:00 +0000

Dr. Sacks - great case.

What I found notable about this is that the patient had been run through all of the commonly used opioids in the US (i.e. not oxymorphone, levorphanol, methadone) except for morphine and was only rotated to morphine after a heroic uptitration of dilaudid to 20mg/hour.

My question is are other people observing a bias against morphine by clinicians, with a preference for other opioids (oxycodone, fentanyl for outpatients, IV hydromorphone for inpatients, etc.) and an avoidance of morphine? Clearly patients have biases against morphine (at least in the UK; Tom blogged about this on the main pallimed site several months ago) but I wonder/observe that many clinicians seem to also (Dr. Sacks - I'm not accusing your team of this - only using the case as a spring board to discuss this) despite there not being any evidence that any one is superior to the other across a population of patients (gi side effects of td fentanyl excepted). There have been a few studies about docs being more comfortable providing higher (equianalgesic) doses of hydromorphone than morphine ('feels' better to give 1mg of dilaudid than 6mg of morphine, etc.) and I wonder if that's part of it as well. I find myself, at times, 'underprescribing' morphine (based on my own standards) and I think it's partially to do with perceived patient fears about it even though that's an assumption i ofen make without actually addressing with the patient....

Please note an edit was made:(Edit: (6/16) Added m...

noreply@blogger.com (Christian Sinclair, MD) — Tue, 17 Jun 2008 15:33:00 +0000

Please note an edit was made:

(Edit: (6/16) Added missing fragment "...consultant believed that the patient was dying and spoke with...)

I think a lot of what the palliative care team is ...

noreply@blogger.com (Christian Sinclair, MD) — Tue, 17 Jun 2008 15:31:00 +0000

I think a lot of what the palliative care team is about the style of communication, and this case does not necessarily expound on the how's or the particular words that were used.

I think this approach of acknowledging different viewpoints on a patient's prognosis is helpful to a degree, but when different doctors have greatly different views on prognosis it can be very important to have a frank discussion of why the two estimates of survival are so different.

I think the teaching point Ms. Chaitin is trying to clarify is that direct confrontation may not be the best approach in all situations. I agree some more information about what was said would be helpful.

The statement:

"The approach the Palliative Care and Ethics Team chose was
to focus their discussion on acknowledging the attending’s
viewpoint and clearly communicating their understanding of
his dedication to his patient, rather than choosing to register
their disagreement with his viewpoint."

may encompass a whole lot of conversations over time that this format did not allow for more detail.

I will try to contact the original author for more details.

I'm interested in this case as this is a common sc...

noreply@blogger.com (Anonymous) — Tue, 17 Jun 2008 02:58:00 +0000

I'm interested in this case as this is a common scenario is my practice as a hospitalist. I'm not sure, though, that I fully understand what the pall care/ethics team did. The consultants communicated that they believed the primary attending's motives were beneficient. However, they "left out" that they thought his/her judgement was incorrect. Surely something more nuanced must have been communicated to change the plan of care. Someone must have communicated the FACT that the pt's prognosis was so poor that a feeding tube wouldn't prolong life. What then was communicated?