Comments on GeriPal - Geriatrics and Palliative Care Blog: Notes From the Field

It sounds like Joe has enjoyed a rich and fulfilli...

2009-09-29T07:52:20.414-07:00

It sounds like Joe has enjoyed a rich and fulfilling life, and with your loving advocacy Anne, he will have a chance at a serene and dignified death.

Beautifully written... and I can only echo the sen...

2009-09-26T14:32:17.578-07:00

Beautifully written...
and I can only echo the sentiments expressed above...

I am sure that your experiences will serve to give you even more of a heart and a passion to serve

The blog Pallimed left some nice words on their si...

2009-09-23T16:07:18.066-07:00

The blog Pallimed left some nice words on their site regarding this post.

http://www.pallimed.org/2009/09/first-person-accounts-of-pain-and.html

Thank you Anne. Very moving and beautifully writte...

2009-09-22T15:02:26.301-07:00

Thank you Anne.
Very moving and beautifully written. My thoughts are with you & your family.

Anne,thank you for your courage and determination ...

2009-09-22T09:16:06.346-07:00

Anne,thank you for your courage and determination on Joe's behalf.
I work in Decedent Affairs and even with my 18-year experience it was a hassle getting it all in place. I ran the gauntlet with my Mom before she died. She, thankfully, had a blessed, gentle death. Like Joe, she had a strong self-identity. She was always gracious, even during painful tx. If we don't rally for access to this wonderful alternative, we'll find ourselves in the same boat later on. Bless you! Liz

Thank you for posting this, Anne. I have been a p...

2009-09-22T04:51:26.664-07:00

Thank you for posting this, Anne. I have been a physician for over 20years and have been working for hospice for the past 3 years. I had an experience two years ago of having to tell 4 different doctors that my father would be transferred to our inpt hospice facility rather than continuing hospitalization for an acute abdomen.

My father had a disabling 4X8 cm L internal capsule hemorrhage (very large bleeding stroke) when he was only 60. He spent the next 8 years significantly disabled in an assisted living facility and finally nursing home when secondary dementia became too severe for him to remain in the ALF. He had increasing courses of antibiotics and eventually increasing hospitalizations for pneumonia. His quality of life in his last year was definitely less than what I believe he intended in his advance directive--I KNOW it was less than my very proud and independent father had lived his life before.

When he awoke with symptoms of an acute abdomen, the nursing home had him in an ambulance before calling me. I got to the hospital before him and started my work with the ER doc, surgeon, pulmonologist and hospitalist. Convinced that my father's appendix had not ruptured, the surgeon believed a laparascopic appendectomy would keep my father from being in more pain if his appendix ruptured. The problem was that my father's appendix had ruptured 4-5 days earlier and he had not been able to feel it because of the damage to his brain from the stroke. The 90-minute laparascopic appy turned into a several hour completely open-the-belly surgery. I called for a bed at our inpt hospice and began telling the doctors that we were stopping what they felt was effective acute care. After all, the surgeon had been able to clean out the abscess and not resect any bowel--he had not given my father the colostomy I told him my father would hate. (His response to me pre-op was "At least he would be alive to hate it.")

The fluid from my father's abdomen was growing MRSA, a particularly hard-to-kill bacteria, but the medical community was strolling along with medicine as usual as if he had a scratch on his arm. It took all my energy to put myself between my father and his "care providers" to keep demanding that we get off the hospital merry-go-round. Fortunately, I was his legal DPOA for health care, or my father and I would have been at their mercy.

To make matters worse, all my colleagues' responses to me shook my confidence. Once I finally got my father in the ambulance headed to our inpatient hospice, I had to call my senior medical director and ask her, "I'm not wrong, am I?"

If I as a physician had this much trouble with "the system", how can our poor families survive against it?

Thank you for sharing this, Anne. I am always int...

2009-09-21T17:13:52.876-07:00

Thank you for sharing this, Anne. I am always interested in hearing how palliative/hospice professionals respond when it comes to their loved ones needing these services. You raised an excellent question: "If I could barely make this happen – with a family in agreement, a patient with clear-cut wishes, and the training and the personality to press the issue - how can the average American?" This is something we must all keep in mind as we work with patients and families.

Thank you Anne for the moving and insightful post....

2009-09-20T21:51:28.236-07:00

Thank you Anne for the moving and insightful post. I was struck not only by your story, but by Ken Covinsky's response and the analogy he raised to a patient with chest pain being told belatedly that "I wish you had asked, in fact we do have a cardiology service."

Coming from this perspective, there are two major barriers to preventing this kind of fiasco from happening again, and again, and again. First, physicians and other health professionals need a better understanding of, comfort with, and reimbursement system for goals of care and end-of-life planning. However, I wonder if the second issue is more important - namely, that in general medical problems are farmed out to the appropriate specialist, and that (1) providers don't recognize end-of-life issues as a discrete, addressable problem (as they would a GI bleed or myocardial infarction), and that (2) even if they do, in most cases there is no easily available, reliable "specialist" (whether it be a geriatrician or palliative care provider) to whom they have a streamlined referral relationship. Thus, even the most well-informed and caring family members have a hard time getting the system to work for their loved ones.

I hope that your story and the poignancy with which you described it play its own small role in shaking up the system and moving us toward better care.

A beautiful and yet sad story. Thank you for shar...

2009-09-20T19:03:26.850-07:00

A beautiful and yet sad story. Thank you for sharing this.

Thanks Anne for sharing this moving story. It rea...

2009-09-20T19:02:43.314-07:00

Thanks Anne for sharing this moving story. It really illustrates so much of what is wrong with how we care for patients and how recent discussions of palliative care have been framed.

It is really sad that the public "debate" about paying for goals of care discussions acted as if the point of these discussions was to ration needed care. As Joe's case illustrate it really is about providing needed care. I think your comment that all 9 doctors did a wonderful job taking care of their little piece, but that no one was really taking care of Joe illustrates what so many patients and families find so frustrating about their medical care. I think most families would feel intense frustration without being able to verbalize what is wrong. I think a medical background made it easier for you to identify what was wrong. It is much more complicated figuring out what to do about it.

The hospitalist's statement that he "wished he'd known" you wanted symptom control and comfort care so he could have ordered a a palliative care consult is frustrating on so many levels. Why did he think presence of this service absolved him of dealing with these issues? Could you imagine an internist saying to a patient with chest pain, "I wish you told me earlier. We have a cardiology service you know. Maybe we can deal with this next admission." Really speaks to the need for changes in training and culture.

Right. I 'felt' the truth of this story, i...

2009-09-20T01:03:42.693-07:00

Right. I 'felt' the truth of this story, in part because my 88 year-old father, also in southern CA, has at least eight physicians (an internist, cardiologist, gastroenterologist, rheumatologist, neurosurgeon and neurologist, and two - two! - urologists), each treating a part of him, really well. He likes them all and has follows-ups, or calls them for appointments, as needed. Does he/they keep his internist/primary care doctor in the loop? Sometimes.
I also 'felt' this story because I realize it could be about me sometime in the not-so-distant future. We've got to make our care of elders better. This is going to take more effort, despite the considerable work of those already involved (like the readers and writers on this blog). Our local hospital doesn't even have a phantom palliative care team and, absent a JCAHO mandate, probably won't anytime soon. Maybe Helen is right in her suggestion that what we all need is a good, savvy, courageous daughter-in-law. For now, it's too bad for us who don't.

Beautiful, sweet and sad, post. Hospice staff has ...

2009-09-19T09:37:38.669-07:00

Beautiful, sweet and sad, post. Hospice staff has long lamented the number of 'late' referrals for admission, diminishing their ability to provide optimal support and care for pts/families at end of life. To follow Drew's comment, no one should have to ask for supportive care, or to 'fight' for hospice care at home. I am both touched and discouraged by this post. Touched that many more people like you, Anne, are aware of and demanding appropriate thoughtful care for their loved ones. Discouraged that despite all our collective efforts in past 10+ years to get palliative care services in hospital settings, we have a long way to go.

I read this, and all I could think about was the c...

2009-09-18T21:15:08.030-07:00

I read this, and all I could think about was the cruel things we do to dying patients.
Reflecting on Helen's comments, and 'death panels' and how absurd that allegation is, as well as how equally absurd what happened to your father in law.
What slays me is the lack of doctors, anyone, sitting down, looking over everything, and telling him and his family what is actually happening, and offering all options. It's this, this lack of treating the patient as a whole person and treating them in the context of their life, personality, and prognosis which I think constitutes the major failing of modern medicine - the major way we abandon our patients. It's not for 'lack of treatment' but the wrong treatments, at the wrong time, which make sense for no one, as in this story.
Patients, families shouldn't have to ask for this (a basically palliative/supportive-only approach); it should be offered up front, and continually reoffered as a patient's condition changes - many will take it, many won't - but no one should need to ask for it.

A remarkable, disturbing, and ultimately moving st...

2009-09-18T19:40:38.249-07:00

A remarkable, disturbing, and ultimately moving story Anne. Thank you for sharing this. Did you ever discover what the deal was with this hospital's phantom "palliative care team?"

Thank you, Anne for this post. Joe is very fortuna...

2009-09-18T15:33:56.975-07:00

Thank you, Anne for this post. Joe is very fortunate to have you with him on this journey.

In the recent brouhaha over "death panels" what is lost is how incredibly lacking our non-system system is in compassionate and appropriate care for those nearing the end of life. Given the complexities, as in the birthing process, the patient in the dying process needs a midwife, a doula, an advocate, or best of all, a strong and courageous daughter-in-law.

Anne, what an amazing story. Kudos to you for per...

2009-09-18T15:11:12.798-07:00

Anne, what an amazing story. Kudos to you for persisting and getting your father-in-law the care he wanted.

I had a similar thoughts when I was trying to help...

2009-09-18T11:02:51.222-07:00

I had a similar thoughts when I was trying to help my parents navigate Medicare D. I found it incredibly confusing and wondered, if I can't do this as a geriatrician, how is the average American going to do this?

Thank you for this beautiful post. I hope everyone involved finds peace and joy in short order.