Wednesday, April 27, 2016

Measures that Matter in Advanced Illness Care

by Meredith MacMartin

I was drawn to the field of palliative care by something subjective, the feeling of deep satisfaction from providing goal-aligned care for my patients, and the desire to do that better. In training, I came to realize that while much of our work lies in the qualitative realm, the key to doing it better lies in the underlying structure and frame of good communication, symptom management, and care coordination. It is no surprise to me, then, that palliative care is embracing the increasing emphasis on healthcare quality and value; in other words, the quantitative measures that underlie the qualitative experience of our patients and families. I was gratified to see the number of sessions at this year’s AAHPM Annual Assembly that were focused on this topic, and was especially interested in the discussions around the less easily measured aspects of the care that we provide. Many of the metrics that have been tracked and reported in the palliative care field have focused on expenditures and resource utilization, and I for one have struggled with how to collect and organize data on the actual quality of the care I’m providing.

So what does high quality palliative care look like? How do we measure quality of life parameters in an efficient and meaningful way? How do we measure the alignment of a patient’s care with his or her goals? How do we measure the ways in which we impact their experience of advanced illness?

Please join NQF's National Quality Partners and the Coalition to Transform Advanced Illness Care (C-TAC), co-hosts of the Wednesday, April 27 (9 pm-10 pm ET) #hpm TweetChat, "Measures that Matter in Advanced Illness Care."  

TweetChat topics:

*             Q1 What is the most important aspect of care delivery that you or your organization currently measures to assess quality #hpm?

*             Q2 How are quality measures integrated into staff performance evaluations & to whom do they apply (leaders, nurses, chaplains, etc.)?

*             Q3 What do individuals & their families see as the most important marker of quality #hpm care?

*             Q4 If you could identify one measure to capture overall #hpm quality, what would it be?

*             Q5 If you could add one policy that would improve the delivery of #hpm, what would it be?

#hpm TweetChats take place every Wednesday at 9 pm ET and began in 2010 to bring people together to discuss a broad range of hospice and palliative medicine topics, learn from interdisciplinary perspectives, and empower everyone to become advocates for high-quality advanced illness care.

Supported by The Research Retirement Foundation, this TweetChat builds on an NQP initiative to promote high-quality care for adult patients of all ages with advanced illness. NQP and C-TAC are working together to galvanize diverse stakeholders to action and maximize their collective impact.

Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center (@DartmouthHitch) and @GeiselMed. She is also one of the moderators of #hpm chat.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 4/27/2016 - 9p ET/ 6p PT
Host: NQF’s National Quality Partners  and Coalition to Transform Advanced Illness Care

 and go to 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 for ease of following. You can also check out the new site dedicated to #hpm chat -

For more on past tweetchats, see our archive here.

Wednesday, April 27, 2016 by Meredith MacMartin ·

Monday, April 25, 2016

Making Palliative Care Stand out on Capitol Hill - Apr 27 - Virtual Lobby Day

by Christian Sinclair

Sure all this political smack talk in a presidential election year has probably got you a little bit jaded and tired. Yet, you have a chance to make a difference in lives of people you will never see by helping solidify the foundation of education and training for palliative care and hospice.

This Wednesday April 27, 2016 is designated as the Virtual Lobby day for PCHETA (Palliative Care and Hospice Education and Training Act). On Wednesday, advocates from over 30 different organizations are working together to tell their legislators about PCHETA and why it should be supported in both the House and the Senate. The AAHPM is one of the lead organizations on this of course, and they have a great guide to help you through the process in addition to their easy to use legislative action center.

I have participated on behalf of AAHPM in two Hill days, where I have visited my Kansas legislators in person. The experience opened my eyes to the importance of telling our stories of palliative care and hospice, because if we don't there are plenty of other people waiting to talk to your Senators and Representatives. The National Stapler Union, The Coach Bus Drivers Organization, and others. If they care enough to tell their stories and needs, shouldn't we advocate for our patients and families as well?

Some simple things you can do after you first become familiar with the bill:

  • Copy this post and send it to your peers in the field!
  • Print off the AAHPM Virtual Lobby Day FAQ and bring it to team!
  • Mark your calendars for Wed April 27th so you do not forget! 
  • Post a message of support on Facebook, Twitter, Instagram, Tumblr and include some of the following hashtags: #PCHETA, #HR3119, #S2748, #hpm and tag your legislators! Email works too!
And don't worry if you miss Wednesday - just get anything in this week to make sure it fits in with the buzz.

We have a great social media presence as hospice and palliative care professionals. So let's put this social media army to some good use and join in on Virtual Lobby Day.

Christian Sinclair, MD, FAAHPM is the editor of Pallimed, president of the American Academy of Hospice and Palliative Medicine and no longer skeptical of the democratic process.

Monday, April 25, 2016 by Christian Sinclair ·

Monday, April 18, 2016

"Why (not) me?" Why doctors do it differently......

by Michael D. Fratkin MD

I am preparing for a presentation named in memory of a man I never met, Thomas Chippendale, MD. The organizer gave me some basics…well respected brain scientist and neurologist at Scripps and pioneer in the area of mindfulness with his wife, Julie Lawrence ChippendaleWanting more material on his personhood, I reached out to Julie. In the hour video-call, she painted a picture of a man that embodied kindness and purpose with every breath he took and in all the choices he made in relationship to his illness and approaching death. Choosing substantially less cancer-directed treatment and much more intentional life-affirming person-centered experiences than the average, Tom’s path reminded me of Ken Murray’s essay, “How Doctor’s Die.”

In that essay, Dr. Murray outlines his observation that while doctors working within a fragmented, high paced, and extremely expensive medical service delivery system will facilitate aggressive and high cost : low value interventions for their patients, they tend to choose home-based care focused on well being and the well being of those they love when they are sick.

According to a Stanford study led by VJ Periyakoil, “Most physicians would choose a do-not-resuscitate or “no code” status for themselves when they are terminally ill, yet they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis..” In this study, almost 90% of surveyed physicians, presumably healthy, would forego resuscitation efforts for themselves.

In our next #hpm chat, on Wednesday, April 20th, 2016, let’s unpack this head-scratching situation together--not just for doctors, but for all of us…nurses, social workers, chaplains, program folks… that have reason to think differently about the nature of modern dying and our desired intensity of medical treatment.

  • Topic 1: What do you think about those of us in healthcare, with knowledge about the limitations of modern medicine, choosing less of it?  
  • Topic 2: What is your belief and / or perspective on our healthcare system often inflicting harm rather than delivering value?
  • Topic 3: What explains the disconnect between what healthcare practitioners know & what the public expects? How might we bridge that divide? 
  • Topic 4: How does your belief about the success or failures of the healthcare system influence your practice?  

Michael D. Fratkin, MD @MichaelDFratkin is a Father, Husband, and Palliative Care physician pioneering from far Northern California with soulful technology enabled person centered care in the home. With an incredible team, he is building ResolutionCare and changing the rules as he goes.

What: #hpm chat on Twitter
When: Wed 4/20/2015 - 9p ET/ 6p PT
Host: Michael D. Fratkin MD Follow @ResolutionCare

For more on past tweetchats, see our archive here and go to 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 for ease of following. You can also check out the new site dedicated to #hpm chat -

You can access the transcripts and analytics of #hpm chats through @Symplur. 

Monday, April 18, 2016 by Niamh van Meines ·

Tuesday, April 5, 2016

A Rose by Any Other Name...Complimentary Therapies in Palliative Care

by Susan Thrane, RN, PhD

Non-western, non-medical, non-allopathic
modalities have been called by many names: 
  • complementary and alternative medicine (CAM), 
  • integrative, 
  • supportive, 
  • adjuvant, 
  • placebo and 
  • hooey just to name a few. 

Whatever you call them (I prefer complementary or integrative), modalities such as massage, yoga, aromatherapy, guided imagery, meditation, energy therapies such as Reiki, Healing Touch, Therapeutic Touch, or creative art therapies (these include dance/movement, art, and music therapies provided by a trained therapist) do require training for the person providing the therapy. 

For Children....
Playing video games, listening to music, virtual reality programs, coloring, or any craft activity can also be helpful for symptom management for children and adolescents. 

For Infants.....
Modalities helpful for symptom management for infants include kangaroo care (skin-to-skin contact) swaddling, holding, rocking, breastfeeding, sucking on a pacifier, or a combination of these.

Generally speaking, these therapies don’t stand alone in the symptom management realm; they are most often used in addition to medications for symptom management. What these modalities bring to the palliative care table is a way for children and families to have fun and to participate in their own care.

By providing access to integrative therapies, we can help manage symptoms and increase the child and family quality of life. Offering complementary therapies allows children to manage symptoms without additional medications that come with side effects that may interfere with play and family time.

What do you think?

  • What are your thoughts on the use of complementary modalities in pediatric palliative care?
  • Do you think there is benefit or harm to any of these modalities?
  • Does your facility use any formal complementary modalities? What about informal modalities such as crafts, coloring or listening to music through headphones?
  • Are there any you would like to try in your setting?
  • Have you tried any of the modalities listed for self-care?
  • What do you think about passive (massage, energy therapies, aromatherapy) versus active (yoga, guided imagery, meditation) modalities?

Join us for a lively discussion of complementary therapy use in pediatric palliative care!

What:  #hpm (hospice and palliative medicine/care) chat on Twitter. Also use #pedpc (pediatric palliative care)
When: Wednesday, April 6, 2016. 9pm ET / 6pm PT
Host: Dr. Susan Thrane (@sthrane)

Dr. Susan Thrane is a PhD prepared nurse researcher from the College of Nursing (@osunursing) at The Ohio State University (@OhioState)

For more on past tweetchats, see our archive here.

 and go to 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 for ease of following. You can also check out the new site dedicated to #hpm chat -


Tuesday, April 5, 2016 by Niamh van Meines ·

Friday, April 1, 2016

Physicians Recieving Botox Score Lower on Empathy and Patient Satisfaction

by Abe R. Feaulx, Pallimed Special Reporter

Researchers published a new study in JMAC (The Journal of Middle Aged Concerns)  reporting interesting findings related to a recent study on the effect of various anti-aging cosmetic procedures on providers’ ability to emote empathy to patients and families.

Providers in the study were randomized into two groups: one group received injections of an inactivated toxin commonly used as a facial muscle paralytic into their foreheads, while the second group received placebo injections. Over the course of the following month, the providers were scored, by their patients, on how well the patients felt the provider expressed empathy and compassion. Results were...surprising.

In the intervention group, providers who had previously received very high scores for their patient empathy prior to receiving the injections, saw their empathy scores decrease. One patient commented, “Dr J used to always let me know she knew what I was feeling just by the worried look on her face. Now she just always looks surprised by what I tell her. It’s like she hadn’t ever heard that I had stage 4 cancer.”

Although empathy scores were lower, patients did make note of other findings. “It seems like Dr. B is so much happier these days. It’s like he finally started following his own advice about getting sleep and taking care of himself. He looks AMAZING!”

Check out more surprising reporting from Abe R. Feaulx on Pallimed.

Friday, April 1, 2016 by Abe R Feaulx ·

Wednesday, March 30, 2016

CDC Chronic Pain Guidelines: Not so bad, but...

by Tom Quinn

In case you didn’t notice, the US Centers for Disease Control published their long-awaited (dreaded?) “CDC Guideline for Prescribing Opioids for Chronic Pain.” It made a pretty big splash: Five editorials plus the full Guideline in the online Mar 15 JAMA, front page New York Times feature article, the first hour on NPR’s “Diane Rehm Show,” (Mar 17) and multiple others. It is specifically aimed at primary care prescribers, who write about half of the scripts for opioids in the US. It is intended to “support clinicians caring for patients outside the context of active cancer care or palliative or end-of-life care.” The Guideline was published in the Mar 15 Weekly Morbidity and Mortality Report and is the first US Government guideline to address treatment of chronic pain; it is 52 pages long. A good “Cliff Notes” version of the Guideline is the JAMA piece by CDC Director Thomas Frieden, MD and Debra Houry, MD.

I should point out that the document was prepared by the CDC’s Division of Unintentional Injury Prevention. The Guideline is intended to address the epidemic of opioid-related deaths, not the pandemic of chronic pain. On its face, the Guideline promotes good, standard prescribing practices, especially for potentially high-risk agents: history and diagnosis of the painful disorder, prognosis of the painful state, history of prior interventions, establishing clear treatment goals, careful selection and implementation of treatments based on patient informed consent and risk-benefit discussion, and close follow-up with scheduled re-evaluation of the condition and effects of the intervention. Appropriately, the Guideline states that “nonpharmacologic therapy and nonopioid pharmacologic therapy are preferred for chronic pain.” The Guideline focuses on chronic pain, but points out that many prescriptions begin for acute pain. For acute pain, the lowest effective doses of opioids for the shortest possible course (3 days or less; “more than 7 days will rarely be needed”) should be used.

Additional risk-management strategies for opioids include: using short-acting opioids at the commencement of treatment; avoid concurrent benzodiazepine prescribing; evaluate patient history of substance misuse; use the state prescription drug monitoring program (PDMP); do initial and periodic urine drug screening.

“Higher” opioid doses are defined as those greater than or equal to 50 morphine milligram equivalents (MME) per day, and the prescriber should “carefully justify” any increases to ¬> 90 MME/day. The discussion states that the 50 and 90 MME levels were chosen because of epidemiologic data showing increasing risk of overdose as the prescribed dose increases.

So, what are the implications of all of this? 

1. I’ll start with the positives:
   a. The Guideline highlights a major public health issue, namely a dramatic increase in the past 20 years in opioid prescribing and a corresponding increase in opioid overdoses and deaths, especially in the past 10 years.
   b. About half of all opioid prescriptions are written by nonspecialists, many of whom have asked for a guideline for treating chronic pain with opioids; this Guideline responds to that need.
   c. Prescribing practices for potentially high-risk medications are reinforced. One hopes that more thoughtful prescribing will reduce the habitual writing of 30-day prescriptions when 7 or 15 days is more appropriate (this assumes a 1 or 2-week, not one-month, follow-up)
   d. Chronic pain is often a complex treatment dilemma—prescribers are reminded that multimodality intervention is the preferred treatment

2. The Guideline does nothing to address (and may make worse) insufficient capacity in our healthcare infrastructure for
   a. Nonpharmacologic treatments such as physical and occupational therapy
   b. Care by pain management specialists, some of whom limit the number of patients they see for medication management
   c. Treatment for substance use disorder including methadone and buprenorphine programs

3. Capacity aside, some insurance will pay for pills but not for physical therapy

4. Many insurance plans will not cover so-called alternative interventions such as therapeutic massage. [I acknowledge a major burden on insurance plans to start covering everything in the “alternative” realm. How could they possibly evaluate them all? Perhaps plans could consider an ‘allowance’ for alternative interventions: massage, acupuncture, yoga, tai chi, etc. The PCP and patient could choose which approach seems most appropriate to the individual situation].

5. Not only is it quick and easy to write a prescription (with some serious attendant risks), but analgesics generally work much faster than other interventions. Sometimes analgesics make it possible for patients to participate in other interventions, such as physical therapy. I fear that some clinicians will interpret the Guideline as requiring physical therapy prior to using “strong analgesics” such as opioids.

6. Alternative analgesics may not be as effective and may has their own serious side effects and contraindications. NSAIDs are an obvious example of those with serious side effects, especially in elders. Acetaminophen has recently been shown to be no more effective than placebo for osteoarthritis patients in a clinical trial.

7. Because of DEA practices it is already difficult for pharmacies to maintain sufficient stock of opioids, so patients commonly must do monthly “pharmacy shopping” to fill their prescriptions. Do prescribers “get” this when the PDMP shows their patient getting their meds at a different pharmacy 4 months in a row?

8. It is easy to conjecture that insurance companies will use the Guideline to reinforce pill count limits

9. Some prescribers, already nervous about the DEA and medical and pharmacy boards looking over their shoulders, may stop prescribing opioids or limit them to no more than 50 MME/day (Morphine Milligram Equivalent)

10. The Guideline stresses screening and follow-up practices that are very time consuming. Many medical systems (and insurance companies) will not be supportive

11. The Guideline has the potential to reinforce prejudice against opioids and opioid-users that is already extensive in medicine, nursing, and pharmacy.

12. Despite language that encourages individualizing treatment plans, the barriers to complex plans are not addressed. Nor is individual patient response. “Start low, go slow” is almost always appropriate, but therapeutic limits to dosing based on epidemiologic data is not entirely rational. The patient in front of me is always an anecdote. But every anecdote falls someplace on a normal curve. We don’t know, especially when initiating treatment, where the patient will ultimately fall on the curve.

13. The Guideline discussion acknowledges that data on the effectiveness of opioids for long-term use is sparse, but lends a lot of weight to research that could be interpreted to suggest that opioids “don’t work” for chronic pain. But the research base is very, very thin.

14. There are many research questions to be addressed, some of which we really haven’t figured out how to ask, much less design an adequate study around. And who will pay for and who will do long-term studies?
   a. What are the biological differences between those who become “addicted” vs those who don’t? Is there a continuum? If so, might an individual move in both directions on the continuum?
   b. What is the impact of rate of metabolism for certain opioids on safety and effectiveness of pharmacologic treatments? What is the prevalence of the so-called ultrarapid metabolizers vs poor metabolizers?
   c. What does “opioids for chronic pain don’t work” really mean? [This clause does not come from the Guideline but is similar to statements made by groups who advocated for the Guideline as a way to reduce opioid prescribing].
   d. There seems to be a subset of people who are very functional on long-term opioids—what differentiates them from the “opioids don’t work” population?
   e. There has been some interesting work showing persistent changes in the brain after opioids have been discontinued. What is the extent of these changes over large populations? Are there predictors for which changes and what their behavioral effects are?
   f. So, really, what is the risk of becoming “addicted?” The varying finding of 0 to 50% just isn’t helpful, and neither the upper nor lower percent seem very credible. How is a clinician to determine, and explain to a patient, what is the risk of addiction?
   g. Can we develop better tools for stratifying risk for misuse?
   h. Does “high risk” have to translate to “don’t treat?” We need evidence-based models for treating chronic pain in those with a history of and those with current substance use disorder.
   i. How effective is urine toxicology monitoring in managing patients? [Will insurance companies cover this cost?]. If the Guideline writers really think urine testing has significant value, the Guideline is weak—“at least annually.”

15. What happens with all the patients who are currently on opioids for chronic pain when their prescriber (or insurance or health system or risk management department) decides that they need to reduce doses based on this Guideline? (This was happening already, even before the CDC Guideline came out)

16. The Guideline specifically does not include care of patients undergoing active cancer treatment and for those in palliative care settings. It remains to be seen what unintended impact the Guideline will have when pain may be part of a serious advanced illness, or may be part of one of several comorbidities.

17. Will professional organizations review their own guidelines, in response to the CDC Guideline? (the American Pain Society and the American Geriatrics Society both published revised guidelines in 2009)

18. Will professional organizations increase pain and chronic pain-related offerings at their annual meetings?

19. Will medical, nursing, dental and pharmacy schools start teaching more about “pain management” rather than just pharmacology and pathophysiology?

20. A major question has to be: can the efficacy and effectiveness of this Guideline be determined on a scale and in a time frame that benefits the most patients and society at large sooner rather than later? Does the government have a commitment beyond issuing a Guideline? Perhaps the CDC and collaborating NIH institutes can work with a couple of major health systems and major insurance companies to implement the Guideline in a study of a comprehensive approach to chronic pain management. The study would have to last a minimum of 2 years. It may make the most sense to start with new patients, not try to cram existing patients into the Guideline (that would be a separate study).

This Guideline puts the prestige of the CDC and US Government behind an approach to prescribing opioids that is intended to help derail the epidemic of opioid-related deaths. CDC-monitored overdose deaths from all classes of drugs (in aggregate and by class) looked like they were leveling off in 2012 and 2013, but spiked again in 2014 (the most recent national data available). The Guideline is an appropriate step, but certainly inadequate to address the enormity, much less the complexity of the issue. In addition, the inadequacies of practice and the knowledge base for treatment of chronic pain remain unaddressed.

Thomas E Quinn, APRN-CNS, AOCN is an oncology and palliative care advanced practice nurse. He has recently accepted a clinical position at Jewish Social Services Hospice in Montgomery County, MD, which will really cut into his pickleball playing at the senior center.

Photo Credit: "lego_head-pain" by Flickr user Mr. Pony via CC 
Photo Credit: "Pain!" by Flickr user Harald via CC 
Photo Credit: "pain" by Flickr user wallsdontlie via CC 

Wednesday, March 30, 2016 by Pallimed Editor ·

Tuesday, March 29, 2016

Do You Feel The Churn?

by Dr. Linda Liotti, D.O.

Do you feel the Churn?  Over the last thirty years, there have been changes in the hospice and palliative care industry. Years ago, nurses carried a case load of 12 – 15 patients. Each patient was seen on a regular basis, their needs and concerns taken care of by the nurse and multidisciplinary team on a weekly basis. Most patients would be followed until death, however a few graduated from hospice when the IDT found they had stabilized.

Recently speaking with several colleagues, we noted a trend which suggests the turnaround time from admission to death continues to shrink. When we attend the interdisciplinary team meeting to discuss admissions, there are times where greater than 50% of patients admitted in the past two weeks, have already died. This trend suggests a phenomenon where admission to pronouncement has escalated with several consequences.

First, is that nurses are spending 3+ hours to admit a patient and complete the electronic medical record (EMR) documentation. Before the social worker or chaplain have time to build a relationship, the nurse is already doing the pronouncement. This very rapid cycle leads to compassion fatigue and burnout for nurses, doctors and the rest of the team as the workload has become much heavier.

Compassion Fatigue

Compassion fatigue has been described as persistent stress and anxiety with feelings of being overwhelmed and hopelessness. Due to the increased time necessary to complete an electronic record, clinicians do not have time to bond with patients and families as well as they did in the past. Data from CMS for “Medicare only” patients for 2014 reveal:

  • Median Length of Stay (LOS) for New Jersey is 18 days, down from 19 days in 2013. 
  • Average LOS for NJ is 61 days, down from 63 days in 2013. 
  • Nationwide statistics are only slightly higher than New Jersey.
  • Median LOS and Average LOS for 2015-2016 are expected to be even lower.
One reason for short length of stay and last minute admissions seems to be late referrals. Suggested reasons include the impact that palliative care programs, Accountable Care Organizations (ACO’s), visiting physician services, and growing hospital systems have on the timing of the hospice referral.

What do you think?
  • Is the timing between admission and death shrinking? 
  • Do social workers and chaplains have enough time to get involved? 
  • Does this add to compassion fatigue and burnout for clinicians? 
  • What is the future of hospice and palliative medicine as mergers, acquisitions and consolidations continue? 
Join Us!

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 3/30/2016 - 9p ET/ 6p PT
Host: Dr. Linda Liotti and NJHPCO

Read more about burnoutcompassion fatigue and self-care on Pallimed.

Dr. Linda Liotti is a physician, and chair of the Education Committee at the New Jersey Hospice and Palliative Care Organization (NJHPCO). NJHPCO can be reached at (908) 

 and go to 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 for ease of following. You can also check out the new site dedicated to #hpm chat -

For more on past tweetchats, see our archive here.

Photo credit:

Tuesday, March 29, 2016 by Niamh van Meines ·

Monday, March 28, 2016

Time of Death: Some Patients Prefer to Die Alone

By Lizzy Miles

A little over a year ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Having knowledge of our assumptions is a first step, but what do we do with that knowledge?  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the fourth in a series of articles where I will take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions.  In my last article, I wrote about the assumption Family will want to be with their loved one when they are dying.

Here is our next assumption: People don’t want to be alone when they die.

This may be an unpopular assertion within my own hospice industry for me to advocate for leaving a patient alone sometimes. Hospices have entire programs devoted to assuring patients and families that they will not ever be alone. Many of them are actually called, “No one dies alone” or NODA. The perhaps unintended consequences of the marketing of these programs is the programs may perpetuate the myth for the public that nobody ever wants to die alone.

For the family member who has minimal prior direct experience of being with a loved one as they die, this assumption that dying patients shouldn’t ever have to be alone can create intense anxiety. Family members will sit vigil for days without eating or sleeping. Hospice professionals may inform the family they can take a break, but this can be a confusing mixed message. Hospice has a program that says that no one should have to die alone, and yet this hospice nurse is telling me to take a break?

Some patients want to die when no one else is there.

Hospice professionals know that companionship while dying is a personal preference. We have those patients who die in the middle of the night. We hear stories about the loved one who just stepped out for five minutes and the patient died. We may have even witnessed a quick death ourselves. I believe this happens by the patient's choice.

Secondary assumption: Patient will want family member by their bedside when they die

When my mom was on hospice and they said her death was close, I sat vigil with my mom throughout the night, sleeping in an uncomfortable recliner. I finally went home to take a shower and mom died when I was 10 minutes away from returning to the facility. I was racked with guilt. Years later when I was working in hospice, I reconciled what had happened after I observed many deaths where patient died after family stepped out.

It seems to happen most often when the patient is a parent. I believe it is a protective factor.

A patient might die when their loved one steps out of the room for just a minute or right before they arrive. It is gut wrenching for the family member if they’re not prepared for this possibility.

Suggested Intervention: Educate family prior to when patient is actively dying that the patient may purposefully die when family is not present.

If you have this conversation while the death is not imminent, you will have a better chance of the family member absorbing what you are telling them. I believe this conversation helps with bereavement as well. When I have prepared a family member ahead of time of the possibility that they will not be present at time of death, and the death happens in their absence, they usually say to me that they understand why. They will say, “He couldn’t bear to leave while I was sitting there. When I left his side, he knew that I would be okay and he could go.”

Before I started having these preparatory conversations, I noticed that the bereaved family members always had strong feelings of guilt for “not being there” when the patient died. They felt their physical absence was somehow a metaphorical representation that they were not emotionally there for the patient. They believe they failed the patient. This rarely is the case, but guilt is a difficult feeling to alleviate. Loved ones can harbor this self-imposed guilt for years after the death.

Suggested Intervention: Encourage family to have an open conversation with patient about the topic (if this is in line with patient and family communication style and cultural beliefs.)

This conversation would perhaps give the patient the opportunity to let the family member know they are uncomfortable with the family member being present when they die. This may be too direct of a conversation between family and patient, so you really have to read whether they would be open to the discussion. A patient may worry that the family member would feel hurt by their choice, so they might not be able to articulate their preference.  They also may not know what they would want, because imagining the moment of death might be too scary.

Ultimately, the most important person to inform is any family member who seems to have the expectation that they will be there for the patient. Unfortunately, even if the family member knows the patient would rather they not be there, that does not mean they will honor the patient’s wishes. I saw a standoff between a private grandmother and an attached granddaughter that lasted way longer than it should have, because the grandmother said she didn’t need the granddaughter to be there, and the granddaughter insisted on vigil. We had an open conversation, but it didn’t help. The granddaughter won that one.

Suggested Intervention: Remember, sometimes your intervention is simply listening.

As hospice professionals, we can advise and facilitate, but ultimately, family dynamics are enduring throughout a lifetime. (This will be covered in a future article).

When I was a volunteer, one time I was asked to sit vigil with a patient to relieve the family. But when I got there, the patient’s wife and daughter were so nervous about leaving that they stayed too. They asked why it was taking so long for their loved one to die. I explained the idea that sometimes a patient can’t or won’t die while family is present. They seemed to understand the conversation and eventually left. The following day, I went to visit again, but as it turned out, the patient had died when I was en route, and the hospice office did not have a chance to contact me.  When I arrived, one of the patient’s daughters pulled me aside and told me that she listened to what I had said the day before and wanted to tell me what had happened with his death. She said when the nurse told her it was going to be soon, she called her mom and sister. She leaned forward and said to her non-responsive father, “Dad, they’re coming. You and I both know that I’m the only one who can handle this, so if you’re going to go, you better go now.” He died within 5 minutes, before his wife and daughter arrived.

I believe that everything happens for a reason, and I was not informed of his death so that I could arrive to the facility for the daughter to tell me her story.

There was another patient with whom I had an open discussion upon our initial meeting. She was a mother and she told me she did not want her children to see her suffer. It was an offhand comment that was illustrated by her death five days later. Her daughter was present at the home and the nurse told the daughter that the patient would be dying soon. The daughter stepped out of the room to call her siblings and in that moment, the patient took her last breath. The adult children all arrived within minutes only to find they hadn’t made it in time. As we waited for the funeral home, the family talked about the patient’s strong independent nature. I informed them that her mother had told me that she did not want them to see her “suffer” and that I believe she chose to go before they arrived. There was a moment of levity for them as they laughed and agreed that it would be just like her to do what she did. They were still mourning her absence, of course, but they admitted that they were comforted by believing their mom was protecting them by dying before they arrived.

These are just a few examples of the times in which I have observed patients choosing to die in a loved one’s absence. As with the other assumptions articles, the purpose of this article is to bring to light some hidden assumptions that we or our family members may have, and identify how we may best support them in their journey.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Monday, March 28, 2016 by Lizzy Miles ·

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