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by Christian Sinclair

In palliative care, the symptoms we frequently encounter (fatigue, pain, nausea, dyspnea, depression, anxiety) have unique challenges, yet many of us have a comfort and confidence in the availability of therapies and the understanding of the symptom. Recently, I have seen two uncommon symptoms, prolonged isolation and fear as a result of a weak immune system. Frankly I don’t quite have a confident construct to understand and treat these two novel issues. It is not any single case that has stood out, but as I work more in outpatient palliative care in an academic cancer center, these themes of fear and isolation are pronounced and different than the fear and isolation that we may see in patients who are in their last days of life.

For many people undergoing chemotherapy or transplants with anti-rejection medications, they find themselves with prolonged periods of weakened immune systems. Obviously there are more dangerous periods with severe neutropenia (low white blood cells), but it is a new situation (to me, at least) when the immunocompromised state is more chronic, more permanent. I understand the biomedical and infectious issues fine. It is the psyschosocial aspects which have piqued my interest.

It is not uncommon to hear patients say that have cut out their favorite outdoor hobbies, or describe themselves as newly minted introverts. “Church? I’d love to go to church, but it isn’t good for me to be around that many people. I could get sick.” “We had a family reunion, but I only stopped by for a few minutes to say hi to everyone. There were a lot of young kids there with germs.” These are real injuries to quality of life, and there is no medicine that can fix that.

Now of course, not everyone who is chronically immunocompromised feels this way, but I am seeing a new trend for my clinical experience. If I want to do a stand-up job for patients, I feel I need a better understanding about the psychological aspects of infection control. And when I don’t know what to do, I go to the literature!

Looking around PubMed there is not too much about the long-term psychosocial impact of infection precautions. Most papers are focused on hospital based isolation (easier to study probably) compared to long-term self-imposed isolation as a result of being chronically immunocompromised. But let’s see what we can learn.

Prototype for isolation gowns?

As you may have already guessed, people who were placed in isolation in hospitals have been found to have (over multiple studies): lower self-esteem, more anxiety, more depression, more fear, more isolation, less nurse and doctor visits, less time when those clinicians were there, more adverse events, less satisfied with their care. Patients and families also do not understand the reasons for isolation in the hospital setting. (Perhaps we send mixed signals, or do not inform well?). Although in chronic immunosuppression, the reason for isolation is most likely the patient’s own fear of getting any infection.

Otherwise there really is not much published on the psychosocial risk and impacts of chronic immunosuppression. I also looked at some of the HIV/AIDS literature, but much of the psychosocial studies were not about the issue of isolation secondary to being immunocompromised. Even long term quality of life studies for people who have received transplants, focus on the frequency of infections and related hospitalizations when discussion of immunosuppression, not the risks of fear or isolation.

I have many more questions now on this topic, all without great (published) answers. How effective are the various ‘germ-free’ strategies? Do we sometimes go overboard to the detriment of patients? Is contact with other people potentially of more benefit than the risk of an infection? How do we help build resilience and support for people who are feel so isolated (meditation, prayer, FaceTime, Skype, and Frankl’s “Man Search for Meaning” are some ideas)? Does it help to let them see your face at least once before you put on the mask?

So without a lot of good published evidence, I still don’t quite have a good context in which to understand these trends. Hopefully, the patients and families I meet will teach me something. I’m really interested to see if any other palliative care clinicians, oncologists, BMT docs and nurses, or transplant professionals have any good tips or evidence. Also if you are a patient or family member, it would be great to hear your experience dealing with chronic immunosuppression.

References:

• Abad, C., Fearday, A., Safdar, N. (2010). Adverse effects of isolation in hospitalised patients: a systematic review. The Journal of Hospital Infection, 76(2), 97–102. doi:10.1016/j.jhin.2010.04.027 (OPEN ACCESS PDF)
• Day, H. R., Perencevich, E. N., Harris, A. D., Himelhoch, S. S., Brown, C. H., Gruber-Baldini, A. L., Morgan, D. J. (2011). Do contact precautions cause depression? A two-year study at a tertiary care medical centre. The Journal of Hospital Infection, 79(2), 103–7. doi:10.1016/j.jhin.2011.03.026 (OPEN ACCESS PDF)
• Radtke et al. Determining the Psychological Impact of Isolation Precautions on Families of ICU Patients. Retrieved June 13, 2015, from http://nursing.jhu.edu/admissions/financial-aid/fellowships/fuld/documents/cohort 3/Posters/Radtke_Fuld_Poster_Final.pdf (OPEN ACCESS PDF)
• Yokoe D et al. Infection prevention and control in health-care facilities in which hematopoietic cell transplant recipients are treated. Bone Marrow Transplantation. 2009 44: 495-507. doi:10.1038/bmt.2009.261 (OPEN ACCESS PDF)

Christian Sinclair, MD, FAAHPM is a palliative care physician at the University of Kansas Medical Center in Kansas City, KS and editor of Pallimed. In his free time, he enjoys coming up with nicknames for the new family dog, Spud.

Photo Credit: "Splendid Isolation" by Colin Smith, licensed via Creative Commons
Photo Credit: "Betty Ford's lemon yellow polka dot gown" by Wikimedia Commons, licensed via Public Domain

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(In 2007 and 2008 I posted previews for the AAHPM/HPNA Annual Assemblies. I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to comment on which sessions you are excited about. If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk. There are some good ones!

This year the Annual Assembly is in Austin, TX from Wednesday March 25th until Saturday, March 28th.)
(Previous posts - Conference Overview, Wed Pre-Cons - AAHPM, Wed Pre-Cons - HPNA)

For the rest of the days of the conference I am not going to mention every single talk but point out what I feel are the highlights of the day, or if I just want to make a silly/witty/whatever comment on a particular title.

Opening Plenary Session: The Nature of Suffering and the Goals of Palliative Care
Eric Cassell, MD MACP, Weill Medical College of Cornell University & Betty Ferrell, PhD RN FAAN, City of Hope

This sounds like a great plenary session to open the main conference. I am very excited to hear these two talk about how people interpret suffering within themselves and see the suffering of others. I have not yet read Cassell's classic 1991 book "The Nature of Suffering and the Goals of Medicine" so if any readers would like to comment on their experience with that book please do. I am sure this talk will make me want to go out to buy it soon after the conference.

Autonomy Run Amok: Refashioning End-of-Life Decision Making
J. Andrew Billings, MD, Harvard Medical School and Massachusetts General Hospital

My peers from Kansas City have all agreed this is the talk we want to go to for the early session. Billings is a great speaker and the theme of autonomy runs through much of medical decision making in palliative care. When autonomy stomps all over other ethical principles the debris left over could be labeled moral distress

AAHPM/PDIA Community Leadership Award Presentation: Pallimed Founder and Contributors:
Drew Rosielle, MD, Medical College of Wisconsin
Christian T. Sinclair, MD, Kansas City Hospice and Palliative Care

What a fascinating pair of speakers! I already know you will be astounded by the verbal gymnastics and striking visual images compiled to entertain and inform. Seriously, we are just very humbly pleased to be formally recognized and would love to see you at the awards ceremony. Yes you have to pay $30 for lunch but we hope to see you there!

Special Interest group (SIG) Symposia:
A Fulfilling Practice in Hospice and Palliative Medicine: How Do You Get There?
Giovanni Elia, MD, San Diego Hospice and The Institute for Palliative Medicine

One of the first sessions presented by a SIG. This is a great way for the SIG's to get involved and present topics relevant to their membership. This one is really a forum of different HPM doctors talking about all the different ways to be a hospice and palliative medicine physicians. The variety of clinical arenas and involvement would surprise most people outside our field.

Controversies in Forgoing Artificial Nutrition and Hydration in Pediatric Palliative Care
David M. Steinhorn, MD, Children’s Memorial Hospital and Northwestern University
Melody L. Hellsten, MS APRN-BC PNP, University of Texas Health Science Center–San Antonio
Joel E. Frader, MD, Children’s Memorial Hospital and Northwestern University

On one hand an acceptable medical practice for adults should apply in principle to children as well. But what are the issues and qualities of pediatric care that actually change parts of the equation? It cannot simply be surrogate decision making since the same issues apply to patients with dementia or other impaired decision making. But those of us who have worked with pediatric palliative care challenges understand this 'feels' different. I am glad this issue is being explored at this conference.

Update on Palliative Care for Patients with HIV/AIDS: Inpatient, Outpatient, and International Perspectives
Jessica Merlin, MD MBA, Hospital of the University of Pennsylvania
Peter Selwyn, MD MPH, Montefiore Medical Center, Albert Einstein College of Medicine
Rodney O. Tucker, MD, University of Alabama at Birmingham Center for Palliative Care
Liliana De Lima, MHA, International Association of Hospice and Palliative Care
Mimi Rivard, MSN APN, St. Vincent’s Medical Center

I don't have much to say about the talk itself besides noting the diminishing HIV patient population in palliative care arenas with the advent of HAART has made the current crop of palliative care trainees less aware of HIV Palliative Care treatment options. I did want to point out the name Jessica Merlin a ID fellow with a strong interest in Palliative Care who is also the Vice Chair of the Professionals in Training SIG. The fact that she got this talk submitted and accepted with such a strong slate of speakers is impressive for not even really being in our field yet and still an ID fellow. She impressed a lot of people with her energy at last year's meeting.

Working in the World of Chronic Kidney Disease: Where, Oh Where, Is Palliative Care?
Charles V. Wellman, MD FAAHPM
Janice Scheufler, RPh PharmD FASCP
Hospice of the Western Reserve

Any bets on if they will sing in this session? A nominee for best title this year. And a good topic given the seeming conflict between the Medicare Hospice Benefit and the Medicare Dialysis Benefit.

Case Conference I

While a non-descript name, this session and the other three have been a product of the PIT-SIG to highlight rising learners in palliative care from multiple disciplines. I will have an upcoming post featuring the various topics and speakers. Try to get to at least one.

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2008 marks the 11th year of the nation's first physician-assisted suicide (PAS) state law, also known as the Death With Dignity (DWD) Act. Every year by law, the Oregon Department of Health Services releases an annual report and characteristics of the patients who died and received prescriptions for the intended self-administration to hasten their death.

The summary of the 2007 annual report is now available for pdf download as well as the supplementary data and all annual reports from the Oregon DHS website. Since this may hit the news and your patients and colleagues may ask how this relates to palliative care where you practice it is important to become somewhat familiar with this report.

For background, here are the Pallimed posts from Annual Report 2006 and Annual Report 2005, as well as a primer on confusing hastened death terms.

The basic summary highlights that the small increase in the number of deaths under the DWD act. There was a fairly significant increase in the number of prescriptions given in the past year, but without a similar rise in the deaths via PAS.

It is important to look at the other outcomes of patients who receive a prescription, because it is not just life or death by DWD. The other outcome is that a patient dies by natural means without ever ingesting meds for physician-assisted suicide. The graphs with the annual reports do not show this trend well, which is why I have laid them out in two different ways.

The first graph shows the change over the past 10 years in absolute numbers and the second shows the change in percentage. The three outcomes are: death via physicians-assisted suicide/DWD (red), death by natural means (beige), alive (green). As you can see there was a larger amount of patients who died by natural means in 2007 after receiving a prescription. Most people interpret this as reinforcing the control a patient has in a situation with increasing loss of control, dignity (86%) and autonomy (100%) % indicates number of prescription recipients whose physicians marked these reasons for the request for PAS. These existential sufferings are not exactly manifested as a simple depression and inherently difficult to treat with medications or intense human interventions as any palliative care person will tell you. I quote Drew from an earlier Pallimed post:

"Death, pretty much by definition, sucks--full of anguish in even the best of circumstances--for patients, families, and frequently clinicians."

But as he goes on to say in the post, it doesn't mean we need to stop trying to work with dying patients and families to make the most of bad situations. As more PAS legislature get presented in states across the US, how will our field respond when they look to us for advice? (By the way Kevorkian is running for Congress. Hold on to your hats, the media should have fun with that one.)

Another way of looking at the proportion of PAS deaths is there are 15.6 PAS deaths for every 10,000 deaths in Oregon or 0.156% Oregon deaths. Other interesting data to review is that no African American has received a prescription from the PAS despite being 1% of all deaths in Oregon. And although the numbers are small so it is hard to draw a conclusion, Asians have had a larger proportions of PAS deaths compared to all Asian deaths in Oregon (54.6 Asian PAS deaths for 10,000 Asian Deaths in Oregon). Email me if that last sentence doesn't make sense.

The other demographics show most were older 55-84 year olds making up 75% and most ahd some college and all had insurance, so less likely to reinforce a poverty/low SES discrimination slippery slope argument against PAS. In fact the most heavily weighted non-disease demographic likely to use PAS were those with Baccalaureate (83/10,000 deaths) or Post-Bacc degrees (113/10,000 deaths). Any hypothesis on why the advanced degrees are more likely to make use of PAS? We don't know how many of those people are also health care professionals.

HIV/AIDS, ALS are the diseases that more associated with PAS with oral cancer being the highest odds ratio of using PAS. Interestingly CHF and COPD are very very underrepresented in PAS deaths, possibly secondary to the more fluctuating course of the disease?

Complications (yes this could go wrong) were few, including regurgitation in 3 and a unexpected length of 3.5 days after ingestion before death occurred.

So I hope this enlightens some to what is often glossed over or misunderstood or not even realized at all. I cannot tell you how many medical students, residents, nurses and other health care professionals lack basic background knowledge on this subject. Make up your mind either way, but start with some facts to make sound reasoned arguments for or against.

Homework question given to me from a medical student with a small Pallimed prize to anyone who can answer this correctly for me (in the comments). Drew has speculated on an answer but we don't have anything definitive yet.

If a person dies by physician-assisted suicide, can the family still collect on the insurance policy, or was that even considered when the law was legislated?

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(Editor's note: Tom posted this on Saturday but it never got distributed by Feedblitz, our email updater, so I'm re-posting it on 12/3/7 in order for it be sent out for those of you who read the blog only via email.)

A Sebastiano Mercadante review is something that always catches my eye. He tends to be thorough and to look at the evidence critically. His recent article in Drugs and Aging on pain management in elderly cancer patients continues the trend. Edoardo Arcuri, a frequent collaborator, is co-author. Another Mercadante characteristic is a willingness to criticize other clinicians. The article cites, among the barriers to adequate management of pain in elders, a study finding that hospice nurses caring for the elderly "are almost twice as likely to incorrectly leave pain off a problem list than to incorrectly ascribe pain to a patient not reporting it." Even more pointed is a zinger at physician "unwillingness" to monitor opioid-related adverse effects.

The article also asks some important questions related to common assumptions about pain and elders: Do older patients feel less pain? Are they more sensitive to analgesics? In general, the answer to both questions is: the evidence is lacking, is unclear, or is contradicatory. The clinical bottom line, then, is: begin at lower doses than one would for younger adults, but be prepared to titrate to patient response. Unfortunately, they do not specify what "lower" means, but most clinicians start at 50% of the "usual" starting dose for opioids. They also say, however, that a cautious approach should not become one of "wasting time" when pain is acute. Pain can be aggressively managed and doses tritrated upward as needed as long as monitoring is frequent and appropriate to the patient's condition.

They particularly counsel caution with traditional (nonselective) NSAIDs because of the higher incidence of severe adverse effects as age increases. "NSAID renal toxicity may appear at lower doses in the elderly with subclinical renal insufficiency."

In the section on opioid elimination they point out that due to decreased muscle mass, serum creatinine is a less reliable predictor of glomerular filtration than in younger patients. Excretion may therefore be slower than predicted by serum creatine values.

Required skills for successful pharmacologic management of pain:

1. objectively assess functional age
2. understand the impact of coexisting conditions
3. carefully manage the number and type of medications taken concurrently
4. adequately communicate with patients and relatives

Other specific points:

• pain assessments and use of analgesics tends to decline as patients get older: those over 85 are at greater risk than those at 65, but there is no evidence that pain is experienced less


• there is great variability in physiologic and functional aging--the rate of decline is variable


• "the hypothesis that elders have a higher threshold for pain has not been supported"
• "no physiologic changes in pain perception in the elderly have been demonstrated"


• in general, elders require lower doses of opioids, but "only careful titration based on individual response can ensure that patients receive the level of analgesia that they require"


• elders do not have a greater incidence of side offects with opioids, but when they occur they tend to be more severe
• "the rate of drug delivery rather than the absolute dose over time was seen to influence both analgesia and side effects" (translation: increased dosing interval for immediate release opioids may be necessary)


• renal function is more important than hepatic function in the development of toxicity from morphine (glucoronidation can occur even in fairly advanced hepatic dysfunction)

It seems to be a common rule of thumb in this country (at least in the academic medical centers of my acquaintence) that hydromorphone is the preferred "first choice" opioid for elders or the first alternative should toxicities to morphine develop. This point is not even addressed in the article. Except for potency, they seem to indicate that morphine and hydromorphone are about the same. Oxycodone is recommended as a good alternative because the "pharmacokinetics of oxycodone are mostly independent of age, renal function, and serum albumin." Of course, parenteral oxycodone is available in Europe, but not in North America. Transdermal fentanyl is also said to be worthy of consideration for patients with chronic pain and reduced renal clearance, because it "might be better tolerated than morphine because of lack of accumulation of important metabolites." They caution, however, that the decreased lean body mass to fat ratio may may "facilitate fentanyl accumulation once fat and muscle stores are saturated."

This may be one of those articles to consider for Drew's famous Teaching File. It requires a close read, but provides an excellent "if you only have time to read one article" resource.

December 1 is World AIDS Day.

A research team at the Mayo Clinic presented findings this week at the meeting of the Radiological Society of North America on its study of cryoablation for pain resulting from metastatic bone tumors. 34 patients with 10 different tumor types were treated. 80% reported "clinically significant" pain reducation that persisted at 24 weeks after the procedure. Next up: a multi-institutional study that compares cryoablation head to head with radiation therapy.

A study (secondary analysis of a bisphosphnate study) published online ahead of print in Cancer this week again highlights the disparity between Caucasian and non-Caucasion patients in pain from advanced cancer. This study found that in a large international (19 countries!) cohort of women with metastatic breast cancer non-Causasian women (82% of whom were from the US) reached a pain level of 7 or higher (Brief Pain Inventory) significantly earlier than white women. They suggest that race be considered a risk factor for pain and that clinicians be prepared for aggressive and earlier intervention for pain in non-Caucasian women.

An article in the October issue of the Fordham Law Review uses the recent trial of a doctor accused of murdering/euthanizing her patients during the Katrina disaster to launch a discussion of intent and the use of "risky pain medication" at the end of life. It's pretty dense & legalistic (oh yeah, its the Fordham Law Review) but essentially defends judicious use of pain medication at the end of life (for pain) and "terminal sedation" [there are plenty of other terms that can be used; this one is particularly loaded] for intractable symptoms. Many people, of course, have raised the ethical issue that intent is difficult for a 3rd party to determine. In a criminal trial, a prosecutor has to convince a jury that the intent was to hasten death. My own opinion: since there is no evidence that appropriately titrated analgesics and sedatives hasten death--and evidence is accumulating (examples here and here) that they don't--double effect is not usually necessary as an ethical basis for defending the use of either class of drug in patients near death and experiencing severe symptoms.

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Neurology has a randomized, placebo-controlled, double-blind trial of smoked marijuana/cannabis for painful HIV-associated peripheral neuropathy. The study involved 50 people with HIV who had at least 3/10 pain from their neuropathy. They were randomized to a standardized marijuana cigarette or a placebo joint (marijuana with the THC extracted out): for those of you who follow these things the cigarettes were an average of 0.9oz and each contained 3.56% delta-9-tetrahydrocannabinol (delta-9-THC)--I think they were provided by the US government. Subjects smoked one cigarette three times daily for 5 days in an inpatient research setting; they were subject to the usual pain research tortures ("long thermal stimulation" etc.). Thankfully though the primary outcome was straightforward: subjects' rating of average pain for the preceding 24h on a 0-100mm visual analog scale. Intention to treat analysis was not used, but there were equal drop-outs in each group after randomization (2 each; 50 people completed the study).

Average age was ~50, most were male, ~35% were African-American, baseline pain scores were ~5/10, and almost all subjects were current cannabis users (they were requested to abstain prior to the research). The study's primary outcome favored marijuana: 52% of marijuana subjects vs. 24% of placebo subjects had at least a 30% reduction in mean pain scores (median reduction was 34% in the marijuana group vs. 17% in the placebo group). The number-needed-to-treat for a 30% pain reduction was 3.6. If 30% doesn't sound like much to you this is actually a really good, positive finding in the world of pharmacologic treatments for neuropathic pain: most trials that show any benefit show in at roughly this magnitude. Cannabis looked good in the experimental pain model part of the trial as well.

So this is some good, real-patient evidence furthering the finding that cannabis/THC is an effective analgesic. The trial was short unfortunately, but in order to control everything this was perhaps necessary (the researchers actually weighed the cigarettes after they were smoked to, I guess, ensure that the subject actually got the THC). The big problem with this is its generalizability. These patients were regular marijuana smokers--they were self-selected to 1) be able to tolerate the side effects, and 2) to perceive benefit--of whatever nature--from marijuana's CNS effects. Even with prescription forms of THC, the CNS/psychotomimetic side effects are often dose-limiting, particularly for older, frail patients. The next study should be using similar quantities of prescription THC for people over 50 years old with painful diabetic peripheral neuropathy who don't smoke marijuana at baseline--good results from that might be practice changing.

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