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Patients attending an ambulatory consulting service in Adelaide, Australia were queried regarding their feelings about stopping medications, and the results were reported in JAGS recently.  The subjects, age 71 on average, were taking an average of ten medications.  Most subjects thought they were taking a "large number" of medications and 92% said they'd be willing to stop one or more medication "if possible."

Big shocker for Pallimed readers, I'm sure. Who wants to take ten medications?

This survey included a geriatrics population and was published in a geriatrics journal.  But if you practice palliative care or see patients with limited prognoses, you should take heart in the notion of slashing medication lists, especially when you can see no clear indication for the medications.  I'm looking at you, primary and secondary preventative medications. 

A few hypotheses for why it's so difficult for some physicians to discontinue medications:

1. Inertia:  It's easier to continue with the status quo.
2. It may require a discussion about overall prognosis:  "Wait a second, doc.  My doctors have been telling me for years to take that orange pill.  Are you sure it's OK to stop now?"  In other words, patients want to do the right thing, even if that means being burdened with taking a boatload of meds.  This is evidenced in the JAGS study by the fact that 71% of patients said they'd accept taking more medications, if necessary.  However, if a prognostic discussion has occurred (e.g. related to advanced cancer, etc), it's then easier to say "I think that medication has done it's job, I admire your commitment to taking it, and now it's OK to give it a rest."
3. Overestimation of actual benefit of medications: "He had an NSTEMI five years ago.  What if we stop the simvastatin and he has another MI? Sure, he's probably going to die from lung cancer in the next several months, but I don't want him to die from an MI. No, he's not having any coronary artery disease symptoms now, but I think it's best just to continue it."   Look at a meta-analysis of several studies evaluating the benefit of statins for primary and secondary prevention of cardiovascular events.  The number needed to treat to prevent one major coronary event was 28, which isn't horrible.  Yet it's not exactly dooming your patient to angina/MI before he dies, especially if you consider that the five studies evaluated in the meta-analysis followed patients for 5-6 years to look for the outcomes. 

I'm always careful to decide whether discontinuation of medications is within my purview as the palliative care consultant.  Is the patient burdened by the polypharmacy?  Do they have dysphagia?  Are they having side effects?  Are you concerned about interactions with other, more important medications?  Is the patient or family having trouble obtaining medications? Does it just plain not make sense for the medication to be continued because of the patient's prognosis?   If the answer is yes to any of these questions, I think it's well within your purview to recommend discontinuation, even if it's an unexpected recommendation from your referring physician.  In making the recommendation, I'd highlight the rationale from a palliative care standpoint.  Focus on the quality of life aspect. 

Use a shared decision-making approach with patients.  Even though it's OK to discontinue meds, it's also OK to not be dogmatic about it if the patient prefers to continue the med (as long as it's not harming them).

As hard as it is to stay on top of the deluge of new research (just even in your own specialty), it also never hurts to remain aware of research regarding the indications for primary/secondary prevention.  A good example would be a recent cohort study from the Annals of Internal Medicine which suggests the optimal BP in patients with chronic kidney disease may be 130 to 159/70 to 89 mm Hg, with patients in that group having lower mortality rates. 

If you're reading this, you're probably part of the choir already.  If so, here's a pat on the back to you for being vigalant about polypharmacy!

For more related to this topic, see my post from a few years ago about "Minimally Disruptive Medicine" (and some other related links in that post).   

Edit 9/22/2013:  Also, I just found some recent American data published in Journal of Palliative Medicine on statin use near the end of life in patients with cancer (along with a letter to the editor on the JPM study). Bottom line: Statin use common in this population right up until time of death, unclear how appropriate the use is in each individual patient, but opportunities to deprescribe were likely missed. 

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JAMA Internal Medicine (JIM, you'll always be Archives of Internal Medicine to me) has published a study of an outcome prediction tool for in-hospital cardiac arrest. Specifically, a tool to predict the rates of neurologically intact survival after an in-hospital arrest. The developers of the tool call it GO-FAR (Good Outcome Following Attempted Resuscitation).

One could imagine ways of re-titling it FORe-GO, if one chose to spend one's time imagine such things.

This is the best tool of its kind that I've seen, although one needs to be very clear about what it's actually predicting.

The paper mostly describes, in detail, the derivation and validation of the tool. I won't belabor this - they did a good job of it, used a large dataset, created a model, tested and validated it to get the best receiver operator curve, etc. The data come from the massive, US-based, 'Get With the Guidelines Registry' (which used to be called the National Registry of Cardiopulmonary Resuscitation). The GWGR collects standardized data on in-hospital cardiac arrests from 366 hospitals in the US (all types and regions of hospitals) (the national rate of CPR survival to discharge of 18% which most of us are aware of comes from the GWGR). The GO-FAR data come from arrests between 2007-2009 (51,000 patients).

Worth belaboring, because this is critically important in understanding if one chooses to use this as a tool to help patients understand CPR outcomes, is how they defined a good outcome: a Cerebral Performance Category (CPC) of 1. CPC of 1 means:

"The patient is conscious, alert, and able to work but might have mild neurologic or psychological deficits (such as mild dysphagia or minor cranial nerve abnormalities). Patients with a CPC score of 2 have moderate cerebral disability and are able to live independently and work in a sheltered environment. Disabilities may include hemiplegia, seizures, ataxia, dysphagia, or permanent memory or mental changes. Patients with CPC scores of 3 through 5 progress through severe cerebral disability, coma or vegetative state, and finally brain death." 

This is important because while I'll venture to claim that nearly everyone would agree CPC scores of 3-5 are dismal outcomes, I think there could be a substantial number of people for whom a CPC of 2 would be acceptable. Not welcomed, not a 'good outcome' (which is, granted, what the researchers here are trying to predict), but better than death for some. So to be clear, the GO-FAR tool predicts rates of survival to hospital discharge with a CPC of 1, every other outcome from a CPC of 2 to death are lumped together as bad outcomes.

GO-FAR is being explicitly developed to help inform discussions at the time of hospital admission, so they deliberately excluded patient/CPR characteristics which predict outcomes but wouldn't be available necessarily to the admitting clinician (such as initial rhythm after arrest, site of arrest as someone may be admitted to the floor then transferred to the ICU prior to arresting). The characteristics which survived their analysis and were included in the final index are below. They very nicely also mentioned what the overall survival to discharge with good outcome was in all of these categories (remember, this is not overall survival, this is survival with a CPC of 1). The overall survival with good outcome rate for the entire dataset (all-comers) is 10%. 

• Neurologically intact/minimal deficits at time of admission - CPC of 1 (this predicted a better outcome; everything else here predicted worse outcome) (18%)
• Major trauma (reason for admission) (6%)
• Acute stroke (reason for admission) (3.7%)
• Metastatic solid tumor or any hematologic malignancy (5.2%)
• Septicemia (basically they mean active bacteremia here; not the sepsis syndrome) (3.6%)
• Medical non-cardiac diagnosis (reason for admission; ie, patients admitted with cardiac conditions did better) (5.6%)
• Hepatic insufficiency (bilirubin greater than 2mg/dl or AST more than 2 times the upper limit of normal) (4.4%)
• Admitted from a skilled nursing facility (3.2%)
• Hypotension or hypoperfusion (5.9%)
• Renal insufficiency (creatinine over 2mg/dl) or dialysis (6.4%)
• Pneumonia (5.2%)
• Age over 70; the older the worse the outcome (10.2% 70-74 down to 4.5% for over 85 years).

Ebell MH, Jang W, Shen Y, and Geocadin RG (2013). Development and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) Score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation. JAMA Internal Medicine PMID: 24018585

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In the previous post you learned about the long journey of research.  Well now is your time to contribute.  Researchers from the Duke Clinical Institute have been reaching out this summer to look for participants of all disciplines to participate in this survey on stress and burnout in hospice and palliative medicine.  So take 15 minutes (now, because you know you wont get to it later) and finish this quick survey.  And then if you really want to earn a gold star, forward it to people in the field with a personal endorsement. (If you already took it earlier this summer, do not take it again.)
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Dear Colleagues,

We at Four Seasons and Duke University are asking for your voluntary participation in a research study questionnaire on work stresses and burnout. Similar to studies conducted in other fields like internal medicine and oncology, we aim to aggregate the responses of several palliative medicine and hospice colleagues in this IRB-approved survey to understand what our colleagues are experiencing in daily practice. These aggregated results will be used to comment on the state of burnout in our discipline currently and inform future strategies to prevent and address this.

There are 29 questions in this web-based confidential survey. We anticipate this short survey will take less than 15 minutes of your time. By completing this survey, you are consenting to participate in this study. No identifying information will be collected or reported. At the end of the survey, you may answer an optional question to provide your email address and indicate an interest in being contacted in the future for more in-depth thoughts on burnout in our field. Other than contributing to our field's knowledge in this area, there are no other benefits to participation.

We anticipate to publish the aggregated findings. The link to the survey is at: http://bit.ly/HPMburnout

Thank you for your time. We look forward to receiving your responses.

Janet Bull MD FAAHPM
Arif Kamal, MD, AAHPM Research SIG Chair
Amy Abernethy, MD FAAHPM, AAHPM President
This survey was reviewed and approved by the AAHPM Research Committee, SCC and Board of Directors.

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 Most health care providers are in a hurry and have little time to devote to reading medical articles. Often browsing just the title and summary, they want to know, “what does this mean for me or my patients?” They have little time to get into the details of how the study was done, who participated, or even the results. This short post is an attempt to demystify the research process to encourage health professionals to seek more from the studies they read and to pass on these findings to others in the field who can make a difference. As an illustration, I will use a recent publication from our research team that appears online at the Journal of Pain and Symptom Management, “I’m not a doctor, and I don’t know if I helped her go faster or slower”

The research, funded by a government grant, began long before the article was published. Our team began thinking about and writing the proposal for funding in the fall of 2008. It was submitted to the National Institutes of Health (NIH) six months later, where it was reviewed by experts. These people were skilled scientists with a wide variety of knowledge and experience. They returned our proposal to us with recommendations for improvement; research proposals are rarely funded the first time without changes. NIH accepts proposals on three dates each year, so we revised and resubmitted our proposal at the next possible opportunity. It was reviewed positively in February 2010. At NIH, reviewers give proposals scores – and this time our proposal’s score was good enough to be funded! We were finally awarded funding (that is, given the money!) in July 2010. By that fall we began gathering the data. Finally, two years later (Fall 2012) we had sufficient data and findings to write our paper. FIVE YEARS from the initial proposal requesting funding to data collection to data analysis to paper writing to publication.

Getting funding to do research and collecting data is hard work, but just the beginning! Analyzing the data is an important process and, in this case, involved the participation of our entire research team. We all read and interpreted interviews that had been typed up. As first author, I integrated the work of the others into a first draft of the manuscript. After many emails and drafts, the team submitted our article to the journal. The journal then sent the paper to three experts who carefully read the paper and made several recommendations aimed at improving our paper. This “peer review” is a very important part of the process, and helps maintain high standards for research publications. Based on these recommendations, our team revised the paper and sent it back to the journal. The journal approved of the changes we made, and the paper was published online May 2013, six months after initial submission.

It is gratifying to know that peer-reviewed research has scientific credibility, but the real test is whether or not it makes a difference in the lives of patients and families. For example, our study has considerable more value if it gets into the hands of hospice staff, the ones who, on a daily basis, can help caregivers manage the pain of their dying loved ones. But many hospice staff never read medical journals, and are often unable to attend conferences, another place where the results of studies like ours are presented. In short, research findings need to translate to the bedside. Years of hard work to produce information that can improve practice deserve attention. As scholars who produce research findings and health care professionals who read them, we have a responsibility to share important results to those who can implement them.

This post was written by Debra Parker Oliver with contributions from The Caregiving Network Research Team (Elaine Wittenberg Lyles, Karla Washington, Robin Kruse and George Demiris)

Photo Credits: Unknown

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Case:

Mr LM is a 59-year-old with NSCLC (non-small cell lung cancer) and metastatic disease to his mediastinum and left chest. He was admitted to the hospital for increasing right sternal chest pain over the past month. Pain is described as burning and non-radiating. There are no exacerbating or relieving factors. The pain is so bad that he has anorexia. The month prior to admission, he was started on Oxycontin, and his dose was titrated up 160 mg twice a day with Dilaudid 8 mg every 3 hours PRN (as needed). Despite dose escalation, his pain was unchanged. While in the hospital, a fentanyl patch and a dilaudid PCA (patient controlled analgesia pump) were added to the original regimen. However, no increased analgesia occurred.

A palliative care consult was obtained. His regimen was simplified to a Dilaudid continuous intravenous infusion (CI) and PCA. Doses were escalated to 4 mg/hour CI and 4 mg PCA with 8 mg RN dose q1 hour. He reported no change in his pain. Co-analgesics of NSAIDS, Tylenol, dexamethasone, and a TCA (tricyclyic anti-depressant) were tried. Radiation oncology was consulted and saw no lesions to irradiate. The patient began to complain of worsening pain. As he continued to complain of 7-10/10 pain, the patient was changed to morphine and titrated to 10 mg continuous infusion and 10 mg PCA dose. Marked analgesia was noted. Attempts to transition to methadone were unsuccessful, as his need for morphine PCA doses remained unchanged. Despite initial complaints of sedation on morphine, the patient’s pain scores decreased to 3/10. As such, he was continued on morphine and discharged from the hospital on a PCA.

Discussion:

Opioid rotation, or trial of an alternative opioid, is commonly practiced when a patient’s pain responds poorly to one opioid or intolerable side effects develop. These intolerable side effects may include nausea, vomiting, sedation, or even hyperalgesia. Although rotation is a common practice, a Cochrane review in 2004 found that evidence to support the practice for opioid rotation was anecdotal and in non-controlled studies. Randomized trials were suggested. Since that time, several prospective studies have been performed where opioid analgesic effect was inadequate or side effects to the opioid were intolerable. Studies by both Narabayashi et al. and Wiraz et al. investigated rotation to an alternative long acting opioid, dilaudid or oxycodone. In addition, patients had increased analgesia compared to the prior regimen. Often the effective equianalgesic dose in these studies was greater than the prior dose, suggesting that prior side effects may have been dose limiting. More is being learned about the pharmacokinetics and pharmacodynamics behind opioid metabolism. It is clear that there is variability between individuals. Some of this may be secondary to disease states (i.e. renal or hepatic impairment), or the effect on metabolism by other drugs. Other differences are due to genetic variations.

Inherited differences in opioid receptors, channels, and metabolism to active and inactive compounds have been found. These differences may extend to transporters effecting bioavailability from the GI tract to even penetration of the blood brain barrier. This variability may account for differences in effectiveness and side effects from one patient to another. For example, “non analgesic responders” to methadone were found to have lower blood levels of the drug when compared to the same dose with “responders.” This suggests that the “nonresponders” may actually just clear methadone faster. It is frequently cited that 5-10% of the Caucasian population has the inability to convert codeine to its active metabolite, making it an ineffective medication in those individuals. Differences in metabolism have also been found with tramadol and oxycodone. In trying to obtain adequate analgesia with these medications, large doses may be tried with the development of side effects.

When switching to a different opioid, it is recommended to decrease the dose by 25-50% and even greater when switching to methadone. The rationale behind this has been “incomplete cross tolerance” and the concern that a patient may be more sensitive to the side effects of the second opioid, especially sedation. Understanding possible individual genetic variability, gives this practice even more credence.

Mr. LM was tolerating 20 mg IV dilaudid /hour without analgesia. His basal rate of 4 mg/hour dilaudid may be equianalgesic to 20-30 mg IV morphine hour. Given his profound tolerance to IV dilaudid and oral oxycodone, a conservative CI of 7 mg morphine/hour was started with frequent PCA doses available. Even with sub-equianalgesic dosing, he noted marked analgesia.

When doses of an opioid are escalated without apparent benefit and/or with side effects, opioid rotation should be considered. An individual’s biochemistry may determine if a particular opioid regimen will be successful and tolerated.

References:

1. Smith, Howard S. “Variations in Opioid Responsiveness.” Pain Physician 11:237-248, 2008. (Open Access PDF)

2. Narabayashi, Masaru et al. “Opioid Rotation from Oral Morphine to Oral Oxycodone in Cancer Patients with Intolerable Adverse Effects: An Open- Label Trial.” Japanese Journal of Clinical Oncology 38: (4)296-304. 2008

3. Quigley C. Opioid switching to improve pain relief and drug tolerability. “Cochrane Database of Systematic Review 2004”, Issue 3. Art. No.: CD004847 DOI: 10.1002/14651858.CD004847.

*Slight editorial changes were made for readability.

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“I’m seeing the road that I’ve traveled
A road paved with heartache and tears
And I’m seeing the past that I’ve wasted
While watchin’ the bubbles in my beer”
- Bob Wills

I’ve always preferred Bob Wills’ “…bubbles…” to Don Ho’s “Tiny Bubbles”. The former always feel more contemplative, but also remind me to continue to break out of the doldrums…the usual…don’t take the world as it sits today as the way it will always be. For those looking to break new ground and collaborate on enhancing palliative care in the community, a new opportunity is getting underway. The American Society of Clinical Oncology (ASCO) in collaboration with the American Academy of Hospice and Palliative Medicine (AAHPM) is embarking on a Virtual Learning Collaborative pilot to improve the delivery of palliative care in oncology practices.

This multiyear project will encourage oncology practices to develop evidence-based approaches to palliative care and to use proven quality improvement techniques to do better each day than the day before.
Applications are being accepted through the end of September from practices that are registered for ASCO’s Quality Oncology Practice Initiative (QOPI). Teams, including a physician-champion and other leaders, from 25 practices will be selected to participate in this pilot.

Visit this link to learn more about the program:
http://www.asco.org/institute-quality/asco-virtual-learning-collaborative

What does this mean to the Pallimed reader?

Reach out to oncology practices with which you work today, or with which you would like to collaborate. Ask them if they are ASCO QOPI practices…are they thinking about this learning opportunity…and would they like a date?

To learn more about this project or about ASCO’s QOPI program send a note to vlc@asco.org Sometimes you have to leave the bubbles to do their thing, and get up off the bar stool, and make a difference in this world. This just might be that opportunity.

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(Please welcome Rea Ginsberg, LCSW-C, ACSW, BCD to Pallimed. She is a retired Director of Social Work Services and Hospice Coordinator. She has extensive experience working with both children and elderly adults mostly in hospitals and long term care facilities. - Sinclair)

I’ve learned that people will forget what you said, People will forget what you did, But people will never forget how you made them feel.
-- Maya Angelou

We are often asked, How can you do that? How can you stand to do that work? Such a dreary subject. Grim but supposedly necessary. Don’t you get depressed with all the talk of dying? Facing death and its consequences every day must be the prime route to burnout. Are mental disorders prevalent among grief counselors? Aren’t you afraid all the talk of dying will make you a little crazy? Don’t you find it frightening, talking about death and dying all the time? Don’t you want some joy in your life? Do something else, anything that doesn’t relate to death.

What were they thinking? Grief counselors seem to have a mournful reputation.

Look below the surface. Our society does not like pain in general. We do not appreciate it. We do not want confrontations with it. We have a national aversion to it. We are busy developing a pill or procedure for every manner of pain, physical and psychic. If it hurts, then by definition it is bad and requires fixing. We are determined to find a surefire anti-aging formula that will also extend our lives forever. Cryogenics? Yes. It shows promise. Really intriguing, actually very exciting, but it is not yet ready for wide use. It could be a future plan. Think forward to pain-free existence. But when?

In our society, death is a painful subject for the patient and for the family. It is an unacceptable outcome of care, health care. We don’t like it. We are inclined to do everything possible to avoid it, even when the alternatives bring far worse health and increased suffering to the patient. Overall, we still prefer to avoid and deny death in our national and personal conversations. Let’s change the subject and be happy. After all, in our American tradition we are entitled to happiness – plus life and liberty. In our attitude, we presume to live forever. It is just easier that way. Finding the easiest way is our American goal. No pain, no awkward planning, no scary discussions, no sad thoughts about loss. We like to live in a wish-fulfillment bubble, a place where death does not happen. Not to ourselves, not to those we love. No talk of tears and fears and sorrow.

The only trouble is that a pain-free life is impossible. For all our pushback and passionate hopefulness, the search is in vain. Pain is inevitable in every human life. Like it or not, wish against it or not, there it is. Pain waits patiently and outlasts our resistance. It is a fundamental fact of life. Death is also a fact of life, a fact until further notice. Significant loss occurs in every life. Death occurs to every life. Death hurts. It causes grief. There is yet no pill to make it go away. Maybe there should not be such a pill. Enter: the supportive grief counselor.

Survivors need interpersonal help and healing. Usually, friends and family do the job. The path is painful and also lonely at times. Sometimes, a professional counselor is just the right remedy. He is prepared to be a companion for a time, along the way to reconstructed balance and equilibrium. Along the way to adjustment. He is equipped to hear the hurt and lighten the load. In a hurry-up, get-over-it society, the grief counselor is a safe harbor in the mourning storm. His focus is not time. It is not a predetermined schedule. It is not a deadline for completion. His focus is connection, understanding, and support. It is helping the survivor to feel comforted because someone who knows grief is actively listening. The center of his attention is less advice and more the not-so-simple act of being with the survivor, to facilitate self-rediscovery and restore dignity.

Psychologist J. William Worden writes, “When unanticipated or incongruous events such as the death of a loved one occur, a person needs to redefine the self and relearn ways to engage with the world without the deceased. The person cannot return to a pre-loss level of functioning but learns how to develop a meaningful life without the deceased loved one.…Death can challenge one’s assumptions about the world (spiritual adjustments) and one’s personal identity (internal adjustments).”

The power to heal psychic wounds is rare and precious. Few people have this skill. It is needed. It is a service. It becomes a moral obligation for those who have that power. To have it is to take pleasure in exercising it. To have it and withhold it is unethical. It is contrary to conscience. It defies accepted standards of professional behavior. It is also unhealthy because there is nothing more important in life than human connection. To assist the progress of connection provides further integrity and growth to the facilitator. The grief counselor is rewarded in greater wholeness, in life lessons studied, learned, and integrated. Death is not an enemy. It is a creative disrupter. It is one of our most profound and valuable teachers. It is life-affirming. It is our gateway to meaningful and vigorous life.

Emergency physician Monica Williams-Murphy comments similarly, from a slightly different perspective: “What human would rob another of the most touching and beautiful moments of life?.…Death…allows us to cherish both life and time more fully.”

Dreary? Depressing? What were they thinking…?

1. J. William Worden, PhD, “Introduction,” Grief Counseling and Grief Therapy, fourth edition, New York: Springer Publishing Company, 2009.

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1. Moore RA, Wiffen PJ, Derry S, McQuay HJ. Gabapentin for chronic neuropathic pain and fibromyalgia in adults. Cochrane Database of Systematic Reviews. 2011, Issue3, Art No.: CD007938. DOI: 10.1002/14651858.CD007938.pub2
2. Micromedex® Healthcare Series [Internet database]. Greenwood Village, Colo: Thomson Reuters (Healthcare) Inc. Updated periodically.
3. Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ. Pregabalin for acute and chronic pain in adults. Cochrane Database of Systematic Reviews. 2009, Issue 3. Art. No.: CD007076. DOI: 10.1002/14651858.CD007076.pub2. Open Access PDF
4. Wiffen PJ, Derry S, Moore RA, McQuay HJ. Carbamazepine for acute and chronic pain in adults. Cochrane Database of Systematic Reviews.  2011, Issue 1. Art. No.: CD005451. DOI: 10.1002/14651858.CD005451.pub2.
5. Zakrzewska J, Linskey M. Trigeminal Neuralgia. Clinical Evidence. 2009; 3(1207). Retrieved Nov 15, 2011 from http://clinicalevidence.bmj.com/ceweb/conditions/nud/1207/1207.jsp
6. Finnerup NB, et al. Algorithm for neuropathic pain treatment: An evidence based proposal. Pain. 12005; 18:289-305.PMID: 16213659. Open Access PDF
7. Gill D, Derry S, Wiffen PJ, Moore RA. Valproic acid and sodium valproate for neuropathic pain and fibromyalgia in adults.Cochrane Database of Systematic Reviews. 2011, Issue 10. Art. No.: CD009183. DOI: 10.1002/14651858.CD009183.pub2.
8. Kochar DK, et al. Sodium valproate for painful diabetic neuropathy:  A randomized double-blind placebo-controlled study. Quarterly J Med. 2004; 97:33-8. PMID: 14702509 Open Access PDF
9. Finnerup NB, et al. The evidence for pharmacological treatment of neuropathic pain. Pain. 2010; 150: 573-581. PMID: 20705215

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 health care.

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When socializing with fellow young physicians, most of whom are not in palliative medicine, I am reminded, in Hospice and Palliative Medicine, I have the unique opportunity to share time and attention with my patients. We reflect on “the old days” of medicine, where physicians had long standing relationships with their patients which allowed them to more easily direct medical decision-making which was appropriate for the individual patient. I often tell others I chose this field because it is the closest thing to that particular kind of medicine, where we can still do ‘the right thing’ for patients, most of the time. That although many parts of hospice are very rigid (eg. 6 month prognosis, palliative goals only) we still have significant freedom to adjust the plan of care to meet the needs of our individual patients.

My friends envy the extended visits I have with patients where I learn about their family and friends and, by doing so, also learn about their goals and fears. The time I am permitted to invest in my patients allows me to find out who the person is and then work to match the medicine to their needs. My colleagues often talk about the opposite - how their job is to make the people fit the medicine. We've marveled over this golden part of medicine where, at least as they die, hospice provides patients what they really need to live well.

Most of us practicing in this field recognize this could not continue indefinitely. With increasing complexity of hospice patients, an aging population and less options for debilitated patients with poor social supports, it was inevitable that the growing cost of hospice would catch someone’s eye and become a target for cutbacks. We've seen necessary layoffs and closings of hospices across the country. Last month this became a personal reality when the hospice I work for was shaken by a downsizing where we lost 19 valued colleagues. We consolidated our two hospice units into one with a loss of four beds. This was made necessary by the increased scrutiny and decreased payments we have received for the care we provide. We now pick apart each component of the GIP stay to be sure patients meet criteria. We second-guess enrollment of patients whose prognoses are in question even when their symptom burden clearly demands hospice support. Our ability to ‘do the right thing, because it is the right thing to do’ has gotten more limited as we rely more heavily on benevolence funds to provide care for patients for whom insurance does not cover the bill. Increasingly, the feeling that I, too, force my patients to fit into the mold of medicine is creeping up on me.

On the day our agency announced the consolidation, I was caring for a young woman in our inpatient center. During her stay she had been very verbal about her appreciation for the way the hospice team cared for her and worked together to provide comprehensive care. She felt a level of respect and humanity she had not felt anywhere else in her long experience with medicine both personally and professionally. When she read about the changes in the news paper the next day and sensed the grief we were all feeling she was appalled  hospice would cut back like other areas of medicine. She made it a point to tell us,

“No matter whether you get lumped in with the rest of medicine, you are still special. What you do here is still special. That needs to be recognized.”

I’ve chosen to believe her. Because if I didn’t, it would be hard to continue to do what we do, knowing we now have one hand tied behind our backs. What we do is special. The people in this field are special. As financial resources continue to change, the field will be forced to change as well. What will not change is that there will always be caring nurses, physicians, counselors, and friends who recognize the value of meeting patients where they are and maximizing their lives as they live with serious illness. Seemingly, hospice and palliative medicine is unique in the way we still place value on time and attention to the person. We cannot lose this focus. The way we deliver the care may change. The setting in which we deliver the care may change. I am hopeful the commitment to care will not.

So where do we go with all of our compassion and commitment? I’m grateful to inspired leaders who lead us in the right direction where we can apply these skills. Grateful for the thoughts of leaders in the field like David Casarett, MD, MA who proposes an alternate method of delivering palliative care at home which does not force patients to give up curative treatments or have a prognosis of 6 months in order to get the care they need. And the work of CAPC and Diane Meier MD FACP who argue for expansion of palliative medicine instead of the limitation of it. And organizations like NHPCO’s Hospice Action Network who advocate for policies to ensure the best care for patients and families facing the end of life. Their recent activity at Capitol Hill aims to help maintain the quality care we deliver.

Because the care we deliver is still special. And the needs of our patients don’t always fit into a mold. Let’s not forget that.

Photo Credit: Heart Shaped Hands by nippe011