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by Staci Mandrola

As a palliative care doctor with a cardiologist husband, we have some interesting conversations after work. Recently John and I have been working on talks to engage cardiologists, cardiac APRNS, PAs, RNs and social workers in end of life issues particular to people living with heart failure. We both recognize from our work that management of distressing symptoms, discussion of goals of care and psychosocial/spiritual support for people living with heart failure and their families can do much more good if employed over years rather than days or weeks. Yet so often, palliative care is mistakenly viewed as only for dying people and that hospice care is only for dying people ready to admit they are dying and give up.

So my talk focuses on correcting misinformation: “When to say when: What is the difference between palliative care and hospice.” Ultimately, this is a challenge to change the perception that palliative care and hospice are about “when to say when.” I’m interested in hearing from others about strategies can we employ as palliative care teams and as cardiac teams to involve palliative care early in the life of a person dealing with heart failure, ideally from their first hospitalization.

Included in the talk is a case for discussion with two variables. A 62yo man with end stage heart failure is dependent on inotropes and not a candidate for heart transplant due to multiple comorbidities. His primary cardiologist had recommended a VAD (ventricular assist device). In question 1, this man is awaiting the arrival of his first grandchild; his heart’s desire is to meet her. In question 2, the man has completed his life’s work; he had confided in the hospital chaplain that “he is ready to go.”

I showed my idea to John and his comment was “no cardiologist is going to ask about that stuff!” It gave me pause to reflect - Do they? Should they? Should all persons who give healthcare to people with serious diseases elicit goals of care? How do we help foster this practice?

John’s talk is “ICDs: When we should…and when we shouldn’t.” ICDs (implantable cardioverter defibrillator). are life saving devices with proven value in selected people. Yet, the trials demonstrating benefit of ICDs enrolled mostly younger men without other serious diseases. We see people with heart failure over time are increasingly burdened with comorbidity. So how do we frame an ICD’s benefits and risks in older, debilitated people who have multiple comorbidities and a shorter expected lifespan? Maybe one helpful factor to elicit is returning to the issue of aligning therapy with a person’s goals.

Would there be value in having a palliative care consult before ICD implantation or generator change in this group of people?

I hope you join John and I as we host #hpm chat Wednesday night to talk about these issues in palliative care and cardiology.

Dr. Staci Mandrola is a wife, mom, grandma and palliative care doc working as part of a kick ass team at the Robley Rex VAMC.


T1 How do we encourage early palliative care consultation for people dealing with heart failure and dispel the myth that palliative care is only for actively dying people?

T2 Should cardiac teams routinely ask about goals of care?

T3 Should all people with heart failure have a palliative care consult before ICD implantation?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/17/2015 - 9p ET/ 6p PT
Host: Dr. Staci Mandrola follow @drstacim and John Mandrola follow @drjohnm

Follow @hpmchat and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Photo credit: "Searching For the Answer" by Erica Frechman and Carolinas Palliative Care and Hospice Group - Used with permission under CC BY SA 2.0
Image Credit: #hpm chat Feb 17, 2016 by Christian Sinclair for Pallimed CC BY SA 2.0

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by Nrupen Bhavsar, Arif Kamal, Donald H. Taylor, Jr.

As a health services and policy research group, we have been looking at a lot of data related to how we deliver care to patients near the end of life. An intriguing area of study is the burden of medications that patients are prescribed when time is short. Here are some data about medication use in the elderly that might be known to many of you but were eye-opening for us:

• 13% of the US population is over the age of 65 but account for 30% of all prescription medication.
• Medicare expenditures for end of life care are approximately $150 billion annually, with much of these costs attributable to medication related to supportive care, comorbid conditions, and disease prevention.
• 61% of older patients under the care of a physician take at least 1 prescription medication; the majority of these patients are taking 3-5 medications. This excludes over the counter medications.
• A recent palliative care study showed the average number of medications prescribed to patients with a year or less of prognosis is around 12
• Statins are used in almost 50% of elderly patients.
• 50% of physicians continue statins for primary prevention until patient death.

However, recent evidence suggests that “statins” (e.g. atorvastatin, simvastatin; medications used to control LDL cholesterol) may not be appropriate in patients with end-stage non-cardiovascular illness. In the Statin Discontinuation Study, investigators from the Palliative Care Research Cooperative (PCRC) reported no survival decrement and improved quality of life in patients whose statin was discontinued when estimated prognosis was 12 months or less. However, the most recent guidelines update from the American College of Cardiology and American Heart Association (ACC/AHA) expanded the indication for statin therapy to prevent cardiovascular disease to an estimated 13 million additional adults. Importantly, the guidelines did not address the appropriateness in patients who have a limited prognosis but are not receiving active end of life care. Prognosis is not a component of their calculator; it is left to clinician judgment how to manage medications not directly related to an active quality of life issue, like pain or nausea. There is similar uncertainty in the appropriate use of other commonly used medications. Research that investigates the appropriateness of real world medication use in patients with life limiting illness may reduce unnecessary spending while improving the quality of care.

We need better information on medication management in patients with limited life expectancy. This week, the American Academy of Hospice and Palliative Medicine (AAHPM) will send a survey to their members on our behalf that aims to understand clinician attitudes and practices regarding counseling patients in palliative care/hospice about medication discontinuation.

Key questions that remain unanswered include:

1. When should we be engaging patients in discussions about medication discontinuation? Is this about a certain prognosis, functional status, or some other estimation of risks from polypharmacy?
2. Are there barriers that prevent discussions about medication discontinuation? Are these related to our own practices, working with other clinicians, or patient/family factors?
3. Whose responsibility is it to manage medications in end of life patients? The palliative care specialist? The primary care provider? The non-palliative care specialists (e.g., cardiologist, nephrologist, etc.)?

There are no easy answers to these questions and we welcome a robust discussion about this.

We encourage you to complete the survey so we can better understand how best to counsel patients about medication discontinuation.

Editor note: I took the survey and it takes less than 10 minutes. - Sinclair

Pallimed Disclaimer on Surveys and Research: Pallimed occasionally publishes opportunities for our readers to participate in research. All surveys are reviewed prior to publication here. We will only do this sporadically. We do not recieve any compensation for publication. If you are interested in collaborating with Pallimed for research, please contact editor@pallimed.org.

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by Yael Schenker, MD, MAS

Case:
A 58-year old man receives a left ventricular assist device (LVAD) for chronic end-stage heart failure in 2010. His LVAD is initially placed as a bridge to transplant. However his post-operative course is complicated by persistent chronic infection, multiple embolic strokes and prolonged hospitalization. He is taken off the transplant list. In 2012 he is readmitted to the hospital from a long-term acute care facility for aortic valvuloplasty and LVAD weaning studies. This hospitalization is complicated by a hematoma causing nerve compression in his right leg and he is no longer able to walk. He tells the cardiothoracic surgery team that he wants his LVAD to be turned off and the team calls a palliative care consult.

Discussion:
The left ventricular assist device (LVAD) was initially designed as a bridge to heart transplant. Open-heart surgery is required to implant an LVAD, which is attached to the left ventricle and the aorta in parallel with the patient’s native cardiovascular system. A small pump is placed in the patient’s abdominal cavity and connected to external battery controlled system that can be worn over or under clothing. (1)

In 2003, the LVAD was approved as destination therapy (LVAD-DT) for patients with chronic end-stage heart failure who are not candidates for a heart transplant. This decision arose from a prospective randomized controlled trial conducted between 1998 and 2001 comparing LVAD-DT to optimal medical management (OMM) for chronic endstage heart failure, in which patients receiving LVADDT showed improved survival over patient receiving OMM at 1-year (52% vs. 25%, p = 0.002) and 2-years (23% vs. 8%, p = 0.09). (2) Improved survival rates with LVADs are coupled with frequent and disabling complications including serious infections and strokes. (1)

Increasing numbers of patients living longer with LVADs has led to growing recognition of an important role for palliative care that may begin before implantation of an LVAD and continue through the end of life. (3) A palliative care clinician may be asked to assess whether LVAD implantation is consistent with a patient’s goals and/or to assist with a transition to comfort-oriented treatment if the decision is made not to implant a device. Palliative care clinicians may help patients and families to complete advance directives that name a surrogate decision maker and describe the circumstances under which withdrawal of the LVAD device would be desired. Palliative care clinicians may also help to assess physical, psychological and spiritual needs that arise with LVAD use and refer patients and families to appropriate resources. Transitions in care, such as the determination that a patient with an LVAD is no longer a candidate for heart transplant, are important opportunities for palliative care clinicians to acknowledge emotions and provide support. A recent article by Goldstein et al provides sample communication techniques for each of these time points. (3)

Most commonly, palliative care clinicians are called to assist with the decision about whether to discontinue a LVAD, as occurred in this case of the month. At this advanced disease stage, not all patients will be able to communicate or have capacity to make decisions. However, conversations should include patients if they are able to participate and want to be involved. A first step is to assess what the patient and/or family understand about heart failure and the LVAD. Opening with a simple question such as “tell me what you understand about your disease” or “tell me what the doctors have talked with you about so far” can offer significant insights.

Clinicians should follow up by asking what the patient and/or family want to know before offering additional information or clarifying misperceptions. The next step is to talk about overall goals of care. “Help me to understand what is important to you” is a good question to initiate this discussion. In this case, the patient described an acceptable quality of life as being able to walk and live independently. Once the patient’s goals have been articulated, the physician can help to develop a treatment plan that matches the patient’s values. (3) In this case, after multiple discussions, the patient made it clear that the burdens of the LVAD now outweighed its benefits for this patient.

Ethical guidelines and legal precedents support a patient’s right to request the withdrawal of any medical intervention, regardless of whether the patient is terminally ill and regardless of whether the intervention prolongs life. (4) If a patient lacks capacity, these rights extend to the appropriate surrogate decision maker. No ethical or legal distinction is made between different types of life-prolonging interventions (i.e., LVADs vs. feeding tubes vs. hemodialysis). Some clinicians have moral objections to turning off an LVAD. In such cases, the clinician should inform the patient of these objections without imposing his or her personal beliefs and help to find a colleague who can fulfill this role.

Turning off an LVAD requires a coordinated effort between physicians and nurses. The palliative care team can be helpful in answering questions and providing support for clinical staff as well as the patient and family. Most often when a LVAD is turned off the patient dies within minutes. However, if there is intrinsic heart function the patient may live for several days. Patients and families should be prepared for these outcomes. Medications such as opioids and benzodiazepines are used to ensure that the patient is comfortable. Premedication is important because most patients will have a significant decrease in cardiac output after the device is turned off.

Resolution:
The LVAD was turned off at the patient’s bedside. Morphine was given by both bolus and infusion to help control symptoms of dyspnea after the LVAD was turned off. He died comfortably approximately 48 hours later.

References:
1. Rizzieri AG, Verheijde JL, Rady MY, McGregor JL. Ethical challenges with the leftventricular assist device as a destinationtherapy. Philos Ethics Humanit Med. 2008;3:20. (OPEN ACCESS PDF)

2. Rose EA, Gelijns AC, Moskowitz AJ, Heitjan DF, Stevenson LW, Dembitsky W, et al. Long term use of a left ventricular assist device forend-stage heart failure. N Engl J Med. 2001;345(20):1435-43. (OPEN ACCESS PDF)

3. Goldstein NE, May CW, Meier DE. Comprehensive care for mechanical circulatorysupport: a new frontier for synergy withpalliative care. Circ Heart Fail. 2011;4(4):519- 27. (OPEN ACCESS PDF)

4. Lampert R, Hayes DL, Annas GJ, Farley MA, Goldstein NE, Hamilton RM, et al. HRS ExpertConsensus Statement on the Management ofCardiovascular Implantable Electronic Devices(CIEDs) in patients nearing end of life orrequesting withdrawal of therapy. Heart Rhythm. 2010;7(7):1008-26.


Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in healthcare. Patient details may have been changed by Pallimed editors to help with anonymity. Links and minor edits are made for clarity and Pallimed editorial standards.

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As David Currow said when he received his Excellence in Research award, hospice and palliative medicine researchers need to meticulously measure toxicity in addition to benefits of palliative interventions. How do you think the State of the Science studies did with this goal? What do you think about the conclusions of each of the studies? Any changes in your practice? Thanks to the presenters Jay Horton, Kimberly Johnson,Nick Dionne-Odom, and Cardinale Smith for reviewing and presenting. Always a fun presentation.

Neurolytic sympathectomy in management of cancer pain-time effect: a prospective, randomized multicenter study http://t.co/fdqI1A2meB #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

Comparative effectiveness-senna to prevent problematic constipation in peds onc patients receiving opioids:http://t.co/rYyx3xY7jI #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

Randomized Controlled Trial of Expressive Writing for Patients With Renal Cell Carcinoma http://t.co/2reY7q5CM0 #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

Safety of benzodiazepines and opioids in very severe respiratory disease: national prospective study http://t.co/CsbkLEa0jF #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

An integrated palliative and respiratory care service for patients with advanced disease: An RCT http://t.co/awhOMOKRAy #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

Inpatient palliative care for patients with acute heart failure: outcomes from a randomized trial. http://t.co/HCRVaXRIw4 #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

Intervention to improve care at life's end in inpatient settings: the BEACON trial. http://t.co/Ht7MwhzIYF #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

Association of experience with illness and end-of-life care with advance care planning in older adults http://t.co/S04ifi57iM #hpm15

— Lyle Fettig (@lfettig) February 28, 2015

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Case: During a weekly Palliative Care Consult meeting, it was discussed that if S, a 57-year-old woman with congestive heart failure, did not receive a heart transplant within several weeks to a few months at the most, she would probably die. I felt led to visit her, even though she was not on my normal unit rounds. On the initial visit, S was welcoming when I stopped by her room. After introducing myself as a Protestant staff chaplain, I inquired about her pain. S told me how uncomfortable she was and how she felt so limited by her physical condition. When I asked how she was coping with any other areas of suffering in her life, her lips quivered and her eyes filled with tears as she told of the burdens in her soul…deep, personal stresses in her life that continued to that very day. She had tearfully vented for about an hour, as I reflectively listened and reassured her that every word was confidential and I was there for her to listen, if nothing else.

After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of S’s death triggered a process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. S was sent home with a ventricular assist device (VAD) long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours S was back in for her heart transplant.

Surgery went very well, and S was out of the ICU with few complications. Yet, once S was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.

Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.



Discussion: 
This was a process that was not resolved as in our modern media. The resolution was assisted by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, her family members who realized her mortality and took ownership of her suffering and their contribution to the dysfunction in their household.

In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as smiling demonstrating 'No Pain' to 10 being 'Unbearable/Excruciating Pain'. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, whatever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”


While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.

References:

1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999

2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine.  Volume 7 No 2. March/April 2009. (Open Access)

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The Happy Hospitalist, a long time blogger and purveyor of fine absurdist humor with the creation of multiple 'animated bear' videos (aka Xtranormal videos) has created a video focused on the dying patient in the intensive care unit...but not really.  Not really in the fact the video is not patient-centered at all, and that is the point.  HH skewers the system that so readily places orders for tests, scans and procedures before even talking or touching the patient.  For anyone in hospital based palliative care I am sure there are many witnessed experiences in the self-declared hyperbole of the video.


Here is the video (link to original post):


Below are some of my favorite lines/segments because they emphasize the frustrating weaknesses of our current approach to care of the critically ill:

"His functional score is -2, which means death within minutes."
'The cardiologist who orders a stat echo, EKG Q1 hour, and a iTunes enhanced pacemaker so he can bill for music therapy.'
"'Everyone deserves to die with a normal BMP."

There are other little gems I don't want to spoil that will make sense to anyone who has worked in the hospital, and for the non health care professionals reading this post I think anyone who has had a loved one critically ill will recognize some of these absurd situations that divorce the care of the numbers from the care of the patient.  This point is highlighted in my favorite line of the video which is repeated over and over again from both the hospitalist and the ICU nurse:

Listen all the way to the end to get a sense of what HH really thinks about palliative care in the hospital.  He has been a big supporter of palliative care and he gets the fact that palliative care should be far upstream from just dying patients in the ICU.  For examples see some of his other posts:
Barriers to Palliative and Hospice Care: Denied by the Nursing Home
End of Life Care Discussion Should Occur Before Death
The Power of Love: Going to Dialysis Hell and Back

Leave your thoughts here but also go to Happy Hospitalist's blog and leave comments there because it is pretty popular and our thoughts might get to people outside our normal blogging circles

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HT: @LVADone on Twitter. I got wind of this article from one of his tweets.

In this month's issue of the Mayo Clinic Proceedings is the first article reporting on a case series with inclusion of palliative medicine (PM) consultations as a routine, integrated part of pre-op or early post-op care for patients receiving ventricular assist device (VAD) as destination therapy (DT). Both Drew and Holly have posted previously on Pallimed about VAD DT.

The Mayo Clinic is a nationally and internationally recognized tertiary and quaternary referral center. As such, beyond the ordinarily sick patients, the Mayo Clinic treats some extremely sick patients, patients who come to be cured, as well as patients who are a mixture of both. The Mayo Clinic recently performed its 100th heart translpant, and they having been implanting VADs as both bridge therapy and as DT. As such, they offer sub-sub-specialty training in Mechanical Circulatory Support and Cardiac Transplantation.


Problematic situations and ethical quandries arise in these environments, given the complexity of the patients, the psycho-social stresses on patients and family members, the array of complications as well the spectrum of outcomes, including "destination nowhere," – a functioning VAD in an otherwise moribund patient. In response, a process of interdisciplinary dialogue at the Mayo Clinic concluded that it would be beneficial to offer PM consultations as a part of standard multidiscipinary care of these patients.

In this consecutive case series, 19 VAD implantations were performed, over a 50-week period. 13 patients (68%) received PM consultations, consisting of an initial intervention of a psychosocial evaluation by a social worker as well as a review of goals of care and advance care plans with PM clinicians, with post-op follow-up. Most PM consultations were proactive and pre-op. The advantage of proactive PM consultations in having already established familiarity and rapport among the patient, family and the PM team was highlighted.

The case series is summarized with patient characteristics, PM consultation status, survival and assessment of end-of-life trajectory. During this period, 5 of these patients died, of which 4 had had PM consultations, 3 had completed a pre-VAD advanced directive. 6 illustrative cases are discussed.

The writers do a nice job of describing their extensive advance care planning process unique to this patient population. They refer to this product as their "preparedness plan," which goes well above and beyond traditional advance directives. The preparedness plan assisted patients and families in thinking about goals and expectations, post-op rehabilitation, psychosocial, spiritual/religious and financial considerations, caregiving concerns, QOL determinants, complications specific to VAD and DT, perioperative morbidity and mortality and ethical issues that may affect clinical DT outcomes. When adverse events occurred, the PM team assisted with preparedness plan implementation, symptom management, and family- and patient-centered support.

Some Thoughts
I noticed that as the series progressed there appeared to be emerging trends of decreasing frequency of PM consultations, more post-op PM consultations, and decreasing frequency of pre-VAD advanced directives (presumably the patients lacking a PM consultation also lacked the more thorough and arguably more useful, personalized preparedness plan). The post-op mortality improved as the series progressed as well. Previous to this endeavor no DT patients at Mayo received proactive PM consultations, and only 14% received any PM consultation whatsoever. This is a small sample and the signal-to-noise ratio is high. Nonetheless the pattern made me wonder if this represents post-conversion, systemic back-sliding/falling-off-the-wagon, although this is expressly not reflected in the discussion.

For discussion sake, I have seen team members and team leadership variously disinclined from parceling out slices of patient care to outsiders. Such teams seem inclined towards jettisoning outside support earlier rather than later in the practice development curve. Sometimes I have seen such jettisoning at the merest blush of the team demonstrating basic competence, at a minimal level of performance, as if going solo were the overriding goal, versus the goal being optimizing outcomes and processes. As has been noted on Pallimed repeatedly, if primary teams can make the necessary time available, and have the multi-disciplinary resources, expertise and communication skills on their team then there's no need for a PM consult. But, I think that such is rare, and complicated care with complicated patients takes organizational specialization and delegation, plus a willingness not to do it all.

Any thoughts or experience from the trenches?

Swetz KM, Freeman MR, Abouezzeddine OF, Carter KA, Boilson BA, Ottenberg AL, Park SJ, & Mueller PS (2011). Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clinic proceedings. Mayo Clinic, 86 (6), 493-500 PMID: 21628614

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Two posts have recently received a little more attention and I wanted to bring them back to everyone's attention if you had not seen the discussions.

The first is a post called "Holiday Heart"  from August 2010 written by Holly Yang.  Anon posted this comment which i thought might get better attention if it got bumped up to a post:

My hospital began LVAD-DT procedures recently. Our inpatient Palliative Medicine Department has been invited by the CV surgeons to participate in their pre-op inter-disciplinary patient evaluation process.

Our discussions re the old adage of "Hope for the Best; Prepare for the Worst", a phrase I never like to use, seems to be now changed in a nuanced way in the process of goals of care discussions with these patients. They have already experienced years of frustrating medical care and are very aware of their limited treatment options. Thus, some are hanging on to a thin thread of hope of this procedure as their last and saving option.

I wish to ask about how do others approach the subjects of hopes, wishes, goals, fears, scenario planning and related topics in the context of the person facing an LVAD procedure? I appreciate any comments.

Any suggestions for our fellow Pallimed reader? Feel free to comment on the original post.

Also a few anonymous commenters have taken to my "Good Luck on Boards" post to start a conversation about board prep and the test. If you needed a space to discuss this it is available, but please do not disclose anything about the questions or answers directly. and keep the comments constructive.

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Going through training at the University of Minnesota, I think I had more exposure to left ventricular assist devices (LVADs) than the average internal medicine resident in the U.S.  Our university had (and continues to have) a very active program, and I remember the conference they had the interns attend to learn what to do and what not to do with LVADs. 

What NOT to do:
Don't remove both battery packs at the same time.
Don't let the driveline get infected.  
Don't do chest compressions, or you'll dislodge the tubes.

What to do:
If their heart stops, use the hand pump instead of chest compressions.
Call the VAD team if you have any problems.

At this point, I think my eyes were as big as saucers, knowing that as one of the "black cloud" interns that I could soon be dealing with problematic drivelines and trying to figure out how to hand pump someone's heart.

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The New York Times Sunday magazine published a must-read article for any hospice or palliative care professional.  I just read it this evening after receiving a couple of tips from Pallimed readers* and don't have time to do the analysis tonight before the email goes out. Hopefully Lyle or I will likely get to covering the article in more detail later this week.

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I am very pleased to announce that Pallimed has officially been cited in the New England Journal of Medicine! (members only).

The letter to the editor was written by my colleague at the University of Kansas, Lindy Landzaat, DO (a 2009 Harvard HPM Fellowship grad) based on Drew's post about Continuous-Flow Left Ventricular Assist Devices (LVAD).  This came about because I knew of Lindy's interest in LVAD's since she had presented at the 2009 Case Conference in Austin on the topic, and encouraged her to write the letter after reading Drew's post.  The three of us worked on it over the next week with Lindy doing the bulk of the work.  It was submitted in mid-December and we got word soon after that it was approved for publication with a few minor revisions.

One important piece to include was a citation to the Pallimed since it really demonstrated the source of some of the viewpoints and allowed an expansion on the subject that a letter to the editor word limit would not allow.

Here is the sentence from the letter to the editor that was referenced:

Though left ventricular assist devices are increasingly helpful and reliable, they still represent a form of life support with a specific set of burdens and complications, particularly as patients die: difficult decisions for patients, families, and doctors surrounding planned device discontinuation; device failure; symptom-management issues; and coordinating end-of-life care that honors patients' wishes and values. 2

And here is how the citation looks:

2. Rosielle D. Rise of the machines. In: Rosielle D, Sinclair C, eds. Pallimed: a hospice & palliative medicine blog. (Accessed March 4, 2010, at http://www.pallimed.org/2009/12/rise-of-machines.html.)

(More on citing a blog in this Pallimed post. If you ever cite a blog it is always nice to leave a mention on the blog referenced.)


Now this is not the first time a blog has been cited in a medical journal (Geripal had a reference in Lancet in Sep 2009 [damn upstarts!]), but I am also hoping that it will not be the last.  This moment raises many important issues about the exchange of ideas and blogs:

• Transports information from blogs to the relatively insulated world of medical journals
• Gains increased awareness about palliative care issues by keeping them in medical journals via letters to the editors, editorials
• Reinforces blogging as a scholarly effort
• Increases awareness of journal readers that blogs are a credible source of informal and post-publication peer review
• Achieves formal archiving in the medical institutional memory of  important points brought up in blogs
• Allows blog readers a streamlined path towards increasing publications
• Crosslinks open access (blogs) with paywall access content

So earlier Wednesday night I spoke with Eric Widera of GeriPal and we have decided to start a workgroup to help help translate information from palliative care related blogs into academic journals.  This is a work in progress and open to any readers that would like to participate.  Some ideas of how it might work:

Any post on Pallimed or GeriPal (or another blog if you are interested) that cites a recent journal article is eligible.

• If you find a post that resonates with you and you want to write up a letter to the editor, just comment on the article and email the author of the post. (If you don't know who that is email me at ctsinclair@gmail.com)
• Gather the deadline, word count, submission instruction info for the cited journal
• Within a week after the post is up (or sooner if necessary) the final authors for the letter will be confirmed and work will proceed by email to submit before the deadline.

With enough effort behind this we could start a listing of letters to the editor or editorials that were seeded by a blog post and demonstrate the effort of the crowd as a whole to contribute to medical information exchange.  But you must be the catalyst.  We have nearly 3000 subscribers, so if only 5% of our readers were interested in doing this we would have 150 people nearly continuously as a loose group working on letters.  That could be huge!

What we need from you:

• More ideas on how this could (or could not) work
• Your willingness to contribute and write a letter based off already formed themes.
• Your desire to be first author on letters to many top notch journals
• A cool name for this workgroup/project including some of the following words or phrases: blogs, social media, translation, stupendous, project, workgroup, GeriPal, Pallimed, awesome,add your own.

So are you in?
Landzaat, L, Sinclair, CT, & Rosielle, D (2010). Continuous-Flow Left Ventricular Assist Device New England Journal of Medicine

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The Annals of Internal Medicine published a survey of hospices regarding their experience with patients who have implantable cardiac defibrillators. (See here for a brief explanation of these devices.)

The survey, conducted by Dr. Nathan Goldstein and colleagues, was directed at hospice administrators with instructions for that person to speak with the clinical staff. Of the 414 hospices that responded (a little less than half of those surveyed), 97% reported having patient(s) with ICDs, 58% reported having at least one patient who was shocked in the last year, and 42% of patients had the device deactivated.

Having a policy on ICD deactivation correlated with patients actually having the devices deactivated (73% of patients enrolled in hospices which had a policy vs. 38% in those without a policy; P < 0.001). The investigators include a sample hospice ICD deactivation policy in the web appendix. They rightly point out that it's impossible to know from this study whether the above correlation indicates a cause-effect relationship. Hopefully, further research is forthcoming. Policy/procedure + education seems to be the key. Without the former, you probably risk having a nurse not having the proper tools/avenues to do what she knows. Without the latter, you risk having inappropriate delays in identifying patients for deactivation and unused or improperly used magnet.

Envision a theoretical scenario: A person with hours to days to live is sent home from the hospital with an active ICD. The ICD has not discharged previously. A hospice nurse frantically calls the medical director during her enrollment visit at the patient's home (on the same day of hospital discharge) because the patient is comatose and has been shocked several times. Perhaps if a hospice policy dictates that nurses seeing patients with ICDs should always have a magnet, this type of scenario could be averted or easily managed. Maybe the magnets are inexpensive enough that every nurse should have one in their car (even though it's not an every day occurence?)

The main point of this case is that someone should have thought about deactivation before the patient was sent home. I hypothesize that most hospice patients with ICDs were hospitalized shortly before hospice enrollment. Regardless of whether this is true, I'll surmise that there is usually plenty of time for the cardiologist/internist/palliative care clinician to come up with a plan for ICD deactivation with the patient or family. Consideration of a hospice referral should trigger any of the above providers to readdress the goals of ICD and consider deactivation, but in many patients, it's appropriate to have this conversation well before hospice referral. So in an ideal world (we're working on it), it should be a non-issue for most patients once they are enrolled in hospice. Goldstein has previously identified barriers that may prevent physicians from bringing up this topic. Maybe hospice nurses don't share these barriers.

Does your hospital, cardiology service, or palliative care team have a policy or procedure for these discussions?

Even if every physician could manage this conversation, some patients would elect to keep the device programmed for discharge at the time of hospice referral. Because of this and the fact that the ideal world won't arrive soon enough, hospices should definitely get to work on their ICD policies and procedures.

Here's more information on deactivating an ICD. (Disclaimer: I have not independently verified the veracity of this information although I do have direct experience with deactivating the Boston Scientific ICD and the instructions listed seem correct- when this device emits a faint beeping sound after a magnet is placed over it, you know it is deactivated. A large household magnet can work but it's probably most effective to have an ICD magnet on hand.)

P.S. The Population-based Palliative Care Research Network (PoPCRN) assisted with the development of this survey. Check them out if you haven't heard of them. PoPCRN's director, Dr. Jean Kutner, just won an AAHPM Distinguished Service Award at the Annual Assembly. Congrats!

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It looks like JAMA has closed their series 'Perspectives on Care at the Close of Life,' which we covered extensively the last year, and started a new one 'Care of the Aging Patient.' There have already been two so far, but in addition this week's issue has a 'Clinician's Corner' piece about a patient with cardiac cachexia and hospice care. Thus, a JAMA update today.

1)
First, the Clinician's Corner piece. The case begins succinctly: Mrs H is an 86-year-old retired health care professional and grandmother with severe cardiac cachexia. She is considering the best way to have her life end. The case goes on to describe a patient with advanced heart failure, slowly progressive functional decline, and multiple comorbidities, who considers her current quality of life marginal (ok now, but very worried it will be intolerable if things get any worse), and is making statements about wanting her life to end (although is not overtly suicidal). With the brief case discussion, which includes quotes from the patient herself, you really get to know and feel for this patient:

I’m still doing things and I still enjoy life, but I’m taking so many medicines, and each year I’m a little worse. I’m very afraid that I’m going to be incapable of doing anything—I had a grandfather who used to say, "Why doesn't God take me?" Well, my feeling is "Why doesn't my heart stop beating because it's in such bad shape?" I used to think when I got depressed that I could go and throw myself off the top of the building. Now I couldn't even get there.

I talked with my doctor about the fact that I was interested in the end of life and that I was thinking about discontinuing all my food and liquids and all my medicines, including my insulin. She told me that if I stopped taking insulin I might have a very high blood glucose. My experience with high blood glucose was that I got very, very thirsty. And when I thought about it, I thought, "Well, that means I would die of thirst." I realized that didn't appeal to me.

Her physician recommends a hospice referral. The following wide-ranging discussion is about US end of life demographics and hospice utilization, prognostication in CHF, causes and epidemiology of requests for hastened death, and how palliative care consultation and hospice care could potentially help this patient. Voluntary cessation of eating and drinking is also discussed. Overall it's a balanced, realistic look at the issues, including a description of how hospice and palliative care services can help patients like this, and the article would make a good one for the teaching file, particularly for med students and residents.

2)
The first 'Aging Patient' piece is a look at care in the last years of life, and presents an approach to care for aging patients with potentially years to live - health maintenance, prevention, care coordination, etc. The 2nd 'Aging Patient' review is about falls, a problem very relevant for our field. Good reviews both: for those of us who didn't do geriatrics training, a nice refresher.

4)
And finally, a recent issue had an editorial about advance care planning, 'death panels,' and why ACP just is not finding widespread acceptance by the public. Good editorial, but what really made my night was its citation of a 1999 editorial about a SUPPORT study analysis which discusses in terms which are equally valid now as then as to why this is so difficult. I'm showing my age (youth) here by never having read this before, but it's worth reading, and probably should go into the must-read file for fellows. Most of the editorial unpacks the ideas in this paragraph:

For most patients, 2 fundamental facts ensure that the transition to death will remain difficult. First is the widespread and deeply held desire not to be dead. This is not only existential angst, or the dread of ultimate insignificance, it is also the struggle to avoid annihilation. Second is medicine's inability to predict the future, and to give patients a precise, reliable prognosis about when death will come. When death is the alternative, many patients who have only a small amount of hope will pay a high price to continue the struggle. Several other factors, such as certain societal values or family dynamics, also may make it difficult for a patient to make the transition to dying.

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Last week's NEJM has the results of a trial of a continuous flow left ventricular device for advanced heart failure. For those of you unfamiliar with LVADs, essentially they are implanted pumps which are inserted directed into the heart and major vessels which pump blood and 'take-over' for the heart; they are partially external (e.g. a battery/power pack is external to the body) - a basic intro, with pictures, is here. Historically they were used to keep patients alive while awaiting heart transplantation. More and more, however, they are being used 'permanently' - to keep patients alive longer, even with no expectation of transplantation. Although costly, and associated with a lot of risks and complications, comparative trials of LVADs with 'medical management' have indicated they can prolong life and improve health related quality of life, in select patients. For a concise summary of the previous data and discussion about LVADs & palliative care, see this Fast Fact; while indeed life-prolonging, a large majority of patients die within 2 years.

This study, a randomized controlled trial, compared outcomes for 200 patients with advanced heart failure (these were sick patients - EF less than 25%, disabling dyspnea/angina at rest or with minimal exertion, nearly 80% receiving inotropes at the time of enrollment, etc.) who were randomized to either a device with a newer design ('continuous flow') or a standard LVAD (which they describe as 'pulsatile-flow' devices). For brevity, I'll use cLVAD and pLVAD in this post. All were ineligible for a transplant at the time of enrollment, although a few ended up receiving transplanted hearts. The authors describe the differences between the devices as such (and there are reasonably understandable diagrams in the paper itself if you're interested):

Newer designs of left ventricular assist devices, involving rotary-pump technology to provide blood flow with reduced pulsatility, have undergone clinical investigation. These continuous-flow left ventricular assist devices have improved the hemodynamics, end-organ function, quality of life, and functional capacity of patients awaiting transplantation. They are also smaller, quieter, and more durable than pulsatile-flow devices, making them potentially better suited for long-term support.

An associated editorial (which gave me the title of this post) describes the differences also:

First-generation devices are pulsatile-displacement pumps that provide blood flow in a fashion analogous to that in the native heart. Such pumps are limited by size and durability, since pulsatility necessitates the mechanical wear of the ventricular assist device. Continuous-flow pumps have small rotating impellers that propel blood forward with surprisingly little hematologic trauma and can do so with greater durability and a smaller size (about the size of a D battery) than pulsatile-flow devices, since there is only a single moving part. Newer pumps use bearing-free designs to minimize device wear.

The primary outcome was survival at 2 years without disabling stroke or need for re-operation, and an intention to treat analysis was used. Patients were followed regularly for the 2 years. The device manufacturer funded the study.

Gross survival was better in the cLVAD group: 1 & 2 year survivals of 68% and 58% vs. 55% and 24% for pLVAD patients. Only 2 patients were alive in the pLVAD group who had the original pumps (most died - the remainder had new pumps or received heart transplants). 46% of the cLVAD patients met the combined primary end point at 2 years vs. 11% for the pLVAD patients: the differences were due to survival, clearly, as well as need for re-operation (36% for pLVAD vs 10% for cLVAD). About 11% in both groups suffered disabling strokes.

Health-related quality of life improved in both groups, about the same (all of this measured by summative HRQOL indices). The burden of therapy was reduced in the cLVAD group, fewer rehospitalizations/surgeries, 88% of time spent outside of a hospital post implantation vs. 74% for the pLVAD, etc. They describe the cause of death in the patients, although not in sufficient detail to really understand what happened - approximately a third of all deaths were from hemorrhagic strokes, however. It looks like about 12% of the deaths in the cLVAD group were from 'external power interruption' which is chilling to contemplate.

While all of this sounds excellent, it's important to realize these were well-selected patients, and while the paper describes inclusion and exclusion criteria, it's unclear (for these 200 patients) what the true denominator was - how many for instance were screened (e.g. end stage heart failure patient hospitalized on inotropes) and excluded prior to enrollment (due to comorbidities or unwillingness to have an LVAD, etc.) - ie this is not a therapy that will be available for many (?most) end stage heart failure patients.

I think of VADs as being paradigmatic of the promises of 21st century, technologically focused medicine. Expensive, constantly changing, and able to keep people alive for a real amount of time - improving 2 year survival from ~10% (which is the survival in the LVAD trials for those who received medical management) to, now, over 50%, improving (at least health-related) quality of life and symptoms, but with much morbidity (strokes, walking around with a battery pack plugged, through your skin, into a pump in your abdomen and chest). Nonetheless the survival advantage is marked and much, much better than most of the latest, fancy 'targeted therapies' for cancer, with an improvement in HRQOL to boot.

My vague enthusiasm aside, there is something which makes me quesy about LVADs, and it's not just the cyborg aspect to them. I wonder if it's also because they challenge, to an extend, some common perceptions about appropriate care for patients with incurable and terminal illnesses. It may be that what's true of - for example - cancer, and dementia, and end stage renal disease (in older, frail patients - see my recent post about this here), is not true with cardiac pump failure. That is, that stepping up invasive, costly medical interventions generally (and of course this is all speaking generally) do very little for our patients: prolong life only marginally (e.g. 'targeted' therapy or long-shot chemotherapy in advanced cancer patients), or at the cost of quality of life by actively worsening it, or by not stopping it from deteriorating (e.g. basically anything we do to prolong life in end stage dementia; dialysis in frail older adults which is life-prolonging but often not 'restorative'). You get the point - this is the stuff we deal with everyday in palliative care.

But, damn, it looks like LVADs might be different - people feel better, and live longer, albeit with still with prognoses shorter than most cancers, and with a sudden/catastrophic death looming over them.

Which has me wondering - how do these patients actually die? Where (ie ICU vs. hospital vs. home)? And how much control do they have other the circumstances? LVAD pumping vs. not vs. explanted? How 'prepared' are patients, and families (for dying, for the choices they will face, for what occurs when the LVAD fails or something else goes wrong)? We don't see many of these patients at my institution, although I know there are scattered palliative care programs nationally who see a lot of LVAD patients - and I'd appreciate any observations about this. In some ways this population seems made for palliative care (symptom management, care planning coincident with seeking aggressive life-prolonging treatments), but I also wonder if as a group the patients are similar to the (speaking in gross generalizations here I know) Phase I trial cancer patients - fiercely seeking any opportunity for life prolongation, and not particularly interested in contemplating Plan B. Certainly, 'palliative care' is no where to be found in the research paper or the editorial.

And now for the patient perspective:

Critical Care Nurse has a discussion of patient and family perspectives on living with LVADs, comparing the experience to EA Poe's The Pit and the Pendulum (ie - feeling out of control of your situation, while waiting for death). (There's free full-text available; the image in this post is from this article).

You can read the article yourself - it's disquieting to say the least, even if the comparison with P&P is a little overbearing. It does give a sense however of what it's like to live with an LVAD: stigma, feeling trapped by the VAD's battery life, loss of control by the intense medicalization of your life, living in fear of death or a complication. Realities, and challenges, not captured by the summative HRQOL scales in the NEJM study.

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As a change of pace, and for some lighter July reading: some academic all-star wrestling about palliative care & CHF....

Social Sciences & Medicine has a series of articles about problems with the interface of specialist palliative care with cardiology for heart failure patients (main article here; commentary here; rebuttal of commentary here).

If you're interested in palliative care for patients with CHF, or if you are an armchair sociologist, you'll find these interesting reading. (I'm the first; I fled all things that smelled like fanciful theorizin' after I left college, but I read the main article - which was written by sociologists - with some nostalgia.) For those of us unwashed by social theory (or washed then cleansed), the main article is a bizarre read and difficult to figure out exactly what is being said (at its core it involves an analysis of interviews done with CHF and palliative clinicians about the challenges in providing 'palliative care' for patients with heart failure). I thought at first it was written by clinicians, then after a few paragraphs figured it couldn't be - then read the rest of the lengthy opening section asking myself Have these people even ever seen a patient? Then they quote from interviews with clinicians (cardiologists, heart failure and palliative nurses, palliative docs) and my response was: 'Oh, these issues and concerns are very familiar to me...well said ma'am...yes, that is a frequent challenge....etc. etc.' and you ask yourself Is this what they've been trying to say?

If you read the commentary (written by cardiology and palliative clinicians) and then the rebuttal/reply to the commentary (by the main authors) you wonder if the real problem is that we're speaking completely different languages, and the main author's overly 'fanciful' (to my brutish clinician's ears) statement of their case (see some examples below) is just too obtuse for us clinicians.

Regarding my difficulty understanding where the main article authors are coming from, for instance, there's a lot of mention about how apparently 'open awareness' of death is a uniformly lauded goal of palliative care, etc. and so it's a problem with CHF patients since so many of them die abruptly. In addition, some of the language seems like fighting words, particularly if you're a palliative clinician. From the abstract:

This paper explores the continuities and discontinuities in recent policy on the extension of palliative care to people with heart failure in the UK. It focuses on how professionals in cardiology and specialist palliative care negotiate their disciplinary boundaries within the context of these policy moves. It draws out the semantic, historical and practical tensions between the core values of cardiology, with its focus on ‘living with heart failure’, and specialist palliative medicine, with its focus on ‘dying with heart failure’.

(Don't let 'it's about how you live' NHPCO know they said that.)

As another example of how you read this and ask yourself what are they talking about: at one point they talk about how prognostication and therefore advance care planning is challenging in CHF (compared to cancer):

Heart failure implies an uncertain disease trajectory with slow decline intertwined with sudden acute episodes resulting in hospitalisation, where 30–50% of people might die suddenly, without an opportunity for a discussion and planning of an Advanced Care Plan....

I read that and say to myself 1) seems like in fact plenty of time for ACP ('slow decline') and 2) uncertainty about time and circumstances for death and possibility of sudden decline/death without warning is in fact a strong argument for the importance of ACP. If we could foresee everything perfectly ACP would be less important.

Anyway, the core of the authors' message seems to be that palliative care is based on a cancer model of relatively predictable death which allows patients/clinicians to predict, plan, change treatment goals, and then we can all encourage patients to embrace death with 'open awareness.' While that's a highly idealized version of reality, and while I think I missed the lecture entitled 'Helping Our Patients Embrace Death With Open Awareness' during my fellowship, fair enough. CHF with its less certain disease courses, more difficult prognostication, decent chance of 'sudden death' (although if you have advanced heart failure and then have an arrest is that really 'sudden death,' really so unexpected?) doesn't fit the cancer model too well.

The interviews with clinicians talk about what you'd expect: the different specialist services at times not understanding what the others do, each having different competencies and priorities, struggling with the well-documented breakdown of any clear distinction between 'comfort' treatments and disease-modifying treatments in CHF, not knowing when someone is dying, variable treatment courses, concerns with frightening patients by talking too frankly with them about prognosis especially as we are often wrong, etc., etc. I think most of us who read this will be familiar and sympathetic to these issues, which are not restricted to the PC-CHF interface - they're all over the place - and relatively unremarkable as far as that goes.

Unremarkable, but important, and I view the important clinical challenge of these issues as a major argument for the need for specialist palliative services for patients with CHF, and why palliative care 'competencies' are uniquely helpful: sorting these things out - as well as they can be sorted out - is kinda what we do.

Anyway, the commentary is more or less a 'WTF? There is a need for specialist palliative care for CHF patients and it works pretty well!' statement.

The counter commentary suggests the physician-authors of the commentary are ignorant and don't understand the social theory & analysis in the main paper. For us armchair intellectuals the whole thing comes off as a feisty academic squabble about fancy words.

In sum, two worlds colliding, although not palliative care and cardiology but medicine and sociology. Or, just to annoy those of you already annoyed by these remarks: two disciplines separated by a common language.

Thanks to Dr. Bob Arnold for alerting me to these.