Wednesday, October 31, 2018

NEW Clinical Practice Guidelines for Quality Palliative Care Released!!

by Christian Sinclair (@ctsinclair)

Happy Halloween!

Today is the beginning of a new era in palliative care as the 4th edition of the Clinical Practice Guidelines for Quality Palliative Care (aka NCP Guidelines) are being released into the wild to begin changing practices all over!

Well, that is the plan and the hope, of course. With any sort of guidelines or statement document, the real work comes AFTER they are published.


To be effective, policymakers, front-line clinicians, and healthcare leaders need to make time in their hectic schedules to review these new guidelines, compare what they are doing to what the standards are, and devise a plan to close those gaps. Over the next month in celebration of National Hospice and Palliative Care Month and the release of these guidelines, you will see posts on Pallimed and our social media accounts highlighting different aspects of the guidelines with straightforward action steps that you can implement.

You may be thinking, "4th edition? I never even heard of a third edition. What are these guidelines and who is telling me how to do my job?" If so, you should know that these guidelines date back to 2002 when The National Consensus Project began. That was a time when palliative care was beginning a rapid period of acceleration but still not widely available nor part of the mainstream of healthcare. The NCP released previous editions in 2004, 2009 and 2013. There is a good chance that some of the things you take for granted today in palliative care indirectly result from the standards set out in these previous editions. From my point of view, the NCP guidelines are designed to stretch us and enable our programs to become more efficient, effective and equitable.

The guidelines are structured to cover eight domains and my quick way of remembering what they are:
  • Structure and Processes of Care - who is on the team and what do they need to know
  • Physical Aspects of Care - how to assess and treat symptoms
  • Psychological and Psychiatric Aspects - how to assess and treat psych-related issues
  • Social Aspects of Care - how to assess and address social support
  • Spiritual, Religious, and Existential Aspects of Care - how to screen and support spiritual issues
  • Cultural Aspects of Care - how culture impacts care delivery
  • Care of the Patient Nearing the End of Life - how to excel in the special time of final days and weeks
  • Ethical and Legal Aspects of Care - regulatory, ACP, and ethics
Some big changes in this edition include a bigger emphasis on the caregiver as a locus of care, the burden of transitions, culture and diversity, and lifting up the science of communication. There is also more content that demonstrates the importance and growth of community-based palliative care and a more extensive reference section to ease access to the primary literature supporting the guidelines. I think many will appreciate the inclusion of examples which will enable teams and organizations to see themselves narratively and not get stuck on using imagination to make potentially dry guidelines come to life.

If you like what you see in these guidelines, please give a big thanks to the team behind it, co-chairs Betty Ferrell and Martha Twaddle, writer and editor Kathy Brandt, the National Coalition for Hospice and Palliative Care led by Amy Melnick and the NCP team of Gwynn Sullivan, Cozzie King, and Vivian Miller.


Lastly, to help all of us be more accountable, I want to encourage you to leave a comment telling the world what you plan to do with these guidelines. It could even be as simple as reading this post or sharing it with key people in your organization.

I'll tell you what I already did this morning, I went to my division chief, Karin Porter-Williamson and volunteered to be part of a small workgroup which will compare our current inpatient and outpatient programs at the University of Kansas Health System with the NCP Guidelines. To my delight, she said, 'Guess what just showed up in my email this morning? The new NCP Guidelines!"

So tell the world, what will you do with these blueprints?

Christian Sinclair, MD, FAAHPM, is the Editor-in-Chief of Pallimed and member of the palliative care dork club. When not reading guidelines over chai tea, he can be found reading rules to boardgames. See more posts from Christian Sinclair here. You can also find him on Twitter at @ctsinclair.

Wednesday, October 31, 2018 by Christian Sinclair ·

Wednesday, October 24, 2018

Antipsychotics Don't Help ICU delirium

by Drew Rosielle (@drosielle)

It just gets worse and worse for the idea that antipsychotics have efficacy for delirium.

Last year I posted about the RCT of haloperidol, risperidone, or placebo for delirium symptoms in 'palliative' patients. I'm pretty sure I called for more controlled, 'high quality,' trials, and we are lucky enough to have another.

This one is a randomized, double-blinded, registered, controlled trial of haloperidol, ziprasidone, or placebo for ICU delirium, just published in NEJM.

The trial took place in a geographically diverse group of US-based intensive care units. They enrolled adult patients in medical or surgical ICUs, who had delirium detected by the CAM-ICU (a well-validated tool: lots of info on it here if you want to read more). They did something interesting - they consented patients for the study (some of them at least) before the onset of delirium.  They also did prospective, broad case-finding, using research personnel to evaluate patients twice daily to see if delirium was present or not. They did not rely on clinical personnel in the ICU to identify delirium but instead proactively found them, which is a nice touch given how under-recognized delirium can be. My sense is that they consented patients rapidly upon admission to the ICU (or their surrogate), then followed them closely to rapidly identify those who developed delirium.

Once delirium was identified, patients were randomized to 2.5mg of haloperidol or 5mg of ziprasidone (or matching placebo) IV, then q12h. (Older patients received lower starting doses.) The dose of the study drug/placebo was doubled with each subsequent dose if the patient did not improve up to a maximum of 20 mg a day of haloperidol or 40 mg a day of ziprasidone. They halved the dose of the drug if a patient later had no delirium per the CAM-ICU, or stopped it if a patient was on the lowest dose already, or if the patient had 4 consecutive assessments indicating no delirium. Regardless, the trial drug/placebo was stopped at 14 days or ICU discharge if the patient made it that far and was still delirious.

The primary endpoint was days alive without delirium (per the CAM-ICU) or coma.

566 patients underwent randomization, 89% of those had hypoactive delirium. Median age was around 60 years old, 43% female, ~83% were white.

The median duration of exposure to a trial drug/placebo was 4 days, with the mean daily doses of 11 mg of haloperidol and 20 mg of ziprasidone.

Active treatment did not seem to do anything. The median number of days alive without delirium or coma was the same in both groups (8.5 vs 8.7). Secondary outcomes were similar between 'active' and placebo groups too - 30 and 90-day survival, time to discontinuation of ventilation, time to ICU discharge, ICU readmission, time to hospital discharge -- all the same.

Safety endpoints were the same across groups too with the exception that QT prolongation was more common in the ziprasidone group (it's not clear to me if this was statistically significant or not). Other side effects, including excessive sedation, were no different between placebo and the study interventions.



What does all this mean?
At the end of the day, I think it underlines the idea that antipsychotics have no routine role in the management of delirium.

It took me a while to accept this, but at this point I'm looking for any compelling data to suggest otherwise. We just don't have it, and I've mostly stopped prescribing antipsychotics for delirium. While any study like this has elements you can pick apart (e.g., I wouldn't exactly dose haloperidol like they did), at the end of the day they used reasonable doses, doses that I have commonly used, and they allowed relatively high doses to be used (this was not a study of super careful, wee doses). They identified the patients prospectively and rigorously - I don't think it likely that we're going to see a substantially better-designed study in the near future than this.

Notably, most of these patients had hypoactive delirium, and they did not break down their findings by patients who were hyperactive vs hypoactive. I imagine some people are going to argue that they should have done that but overall I'm glad they didn't. It was only 10% of their subjects, and it's better they didn't data-mine their findings that way. It could have been a prespecified analysis, which as far as I can tell it was not, and the study wasn't powered to detect differences between so few subjects, and so I'm glad they left it be.

I think it would be reasonable to argue that we still really need a similarly well-done, large, study only for hyperactive ICU delirium - I think we do - but I also don't see any reason any of us should advocate for the idea that antipsychotics are effective for hyperactive delirium in the meantime. They might be, but I don't think that's very likely personally. If someone does it, I really hope they include quetiapine as one of the arms, as it's used a lot around many institutions, and I suspect for the worse (although I truly don't know), and would welcome any good data on it.

At this point, I think a lot of the perceived benefits people have of antipsychotics is that they sometimes sedate people, even if only mildly at times, and so patients 'look better,' but we've actually done nothing to modify the course of their delirium or improve their cognition.

Sedating someone can sometimes be a perfectly reasonable/helpful/legitimate therapeutic outcome: for very agitated patients who may pose a risk to themselves, or for patients very near the end of life for whom our care goals are really centered on preventing and actively minimizing any sources of suffering.

But it's not a great outcome for most of our other patients, and like a lot of things we deal with (eg, cancer-associated appetite disturbances and muscle loss) delirium is a complex phenomenon and needs complex interventions to prevent/mitigate, and perhaps the entire idea that there is a 'right drug' (or drug class) to help it was wrong all along.

For more articles by Drew Rosielle, click here. For more articles about delirium, click here. For more articles about the ICU, click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle

Reference
1. Girard TD et al. Haloperidol and Ziprasidone for Treatment of Delirium in Critical Illness. N Engl J Med. 2018 Oct 22. doi: 10.1056/NEJMoa1808217.

Wednesday, October 24, 2018 by Drew Rosielle MD ·

Friday, October 5, 2018

On Football, Palliative Care, and Quality Measurement

by Arif Kamal (@arifkamalmd)

Transition into the Fall months means one thing for a boy like me from the Midwest – it’s football season. Snare drum cadences, referee whistles, and the crunch of linemen helmets were the soundtrack to many memorable evenings growing up. In football, winning requires strategy and execution, while embracing the humility that even the most exquisite gameplan, well steeped in planning and expertise, can fall flat. Though the two worlds seem unrelated, I often think of football analogies when approaching palliative care quality improvement.

Football offenses across college and professional leagues are increasingly calling the Run-Pass-Option (or RPO for short). In the RPO, a quarterback has three choices after the snap – hand the ball off to a running back, pass the ball to a wide receiver, or start running the ball himself. The overall goal is to keep defenses guessing, while matriculating the ball down the field efficiently. Based on the situation, the quarterback chooses where the ball will go. For example, if time is short and there are no timeouts, the quarterback may choose to throw a long pass to a wide receiver streaking down the sideline to both gain yards and stop the clock. If the defense is playing back, then the quarterback may run the ball himself for a big gain. Notice that all three options (throw, running back run, quarterback run) are always available, can meet the goal of moving the ball down the field, but are decided upon based on the needs of the team and the alignment of the defense.

Which bring us to healthcare quality improvement and measurement. There have been increasing discussions in all of healthcare, including within palliative care, about the spirit of quality measurement. A recent Health Affairs article highlighted the burden of quality measurement at the organization level, concluding that clinicians and staff spend 15 hours per week addressing requirements for external quality reporting. Further, the study estimated $15.4 billion spent annually by four specialties (general internists, family medicine, cardiology, orthopedics) on such activities. The authors concluded that quality measurement activities should be prioritized, so that increasing demands are not just piled on to the plates of clinicians without a strong rationale. This spirit of reducing complexity also runs in the ethos of palliative medicine, as we frequently help patients and families avoid polypharmacy complications while simplifying medication lists. But we have found complexities in quality measurement in specialty palliative care, with lists of quality measures applicable to our field numbering over 300. There’s a sense that change is needed.

Oftentimes, critiques are made about the types of quality measures that exist. In healthcare quality measurement, there are three widely-accepted categories for quality measures. This three-part framework was introduced and proliferated by Avedis Donabedian, oft-considered the father of the modern healthcare quality improvement movement. Dr. Donabedian proposed that quality measures would either evaluate structure, process, or outcomes of care (to contrast from Run-Pass-Option – RPO – I will call this SPO for short). In SPO, quality measures are categorized by their intent. For example, if a measure aims to evaluate the infrastructure, resources, or policies in place, then it is a Structural measure. If a measure aims to assess whether something was done, then it is a Process measure. Health outcome measures are the third category, and most typically thought of as “a change in a patient’s health state.” Related to health outcome measures are those thought of as outcomes, but not affecting a patient’s health. The Donabedian SPO framework does not specifically account for these, but I often think of them as “system outcomes.” Examples are patient experience or satisfaction, costs and financial toxicity, and access.

To make this clear, let’s take the example of advance care planning, the primary “procedure” of palliative care professionals. A Structural measure related to advance care planning may involve personnel (“All members of the palliative care team receive annual CE in local and state laws, legal precedence, and policies regarding advance directives, physician orders for scope of treatment, and surrogate decision-making”). This measure is Structural because it evaluates a characteristic inherent to the team or the service. A Process measure may look like, “75% of patients seen by the palliative care team have a documented advance directive by the third visit.” Such a measure looks at whether something was done. A true Outcome measure would look like, “Percent of patients with moderate to severe pain with reductions in pain scores by at least 50% within 24 hours of the first consult.” This is measuring the change in a patient’s health state.

A brief word on patient-reported outcomes (PRO). Patient-reported outcomes are “report of the statue of a patient’s health condition that comes directly from the patient.” Readers may wonder where PROs fit in the measurement framework. Importantly, PROs themselves are quite simply the method to collect data, but are not quality measures themselves. Just like electronic health record data can inform a Process measures, data from the patients’ own voice can inform any of the SPO measures. Oftentimes, when people say “PRO” what they are really referring to is “PRO-PM” (patient reported outcome performance measure). A PRO-PM is performance measure that is based on patient-reported outcome data aggregated for measurement purposes (e.g., percentage of patients receiving specialty palliative care whose depression score, as self-reported by the PHQ-9, is improved within the first eight weeks).

So let’s bring football and quality measurement back together. When a best practice is defined and supported by the evidence, the natural progression to ensure the best practice is followed is to develop a quality measure. In football, a quarterback in an RPO has three options. Similarly, to ensure a best practice is followed with quality measurement, we can develop a Structure, Process, or Outcome measure. And choosing the type of measure to develop and use requires understanding whether you want others to “have something” (Structure), “do something” (Process), or “change something” (Outcome). It’s tempting to think that all quality measures should be Outcome measures, since improving patient outcomes is what we all ultimately set out to do. But there are two reasons to should proceed with caution.

First, Outcome measures require a clear sense of how differences in outcomes (between two organizations, or between “ideal” and “actual”) will be treated. For example, if a small, rural, safety net hospital with one part-time palliative care clinicians who makes rounds every third day cannot improve the proposed measure “Percent of patients with moderate to severe pain with reductions in pain scores by at least 50% within 24 hours of the first consult,” how do we reconcile the “actual” versus an “ideal”? Such a measure – exactly applied - would doom this program for failure. So how does one “adjust” for the limitations of access to the team (every third day versus daily)? Or what if there were patient or disease factors that made meeting this measure more difficult? The concept of acknowledging that not all things are equal is called “risk adjustment.” What we want to know is if a difference between actual and ideal is expected, due to factors beyond the team’s control, how is that difference handled?

The second complicating factor with Outcome measures is accountability. If I said that the palliative care consult team’s reimbursement would be cut by 10% if a patient’s post-hospitalization satisfaction score was below the 50th percentile, what would be the reaction? Many in palliative care would argue that a patient satisfaction score is reflective of an accumulation of experiences and interactions throughout the hospitalization, of which the palliative care team was part of only a minority. So how do we attribute good or bad outcomes to individual clinicians or individual teams, when we work in complicated networks of providers, clinicians, health staff, environmental staff, and administrative professionals?

Both risk adjustment and accountability challenges should give pause in rushing towards Outcome measures. But it does not mean the challenges cannot be overcome, nor that Outcome measures are not needed in palliative care. Certainly, to remain in-step with the rest of healthcare, we will need to think about the definitions and measurement methodologies for our own Outcome measures. But we should not in that process ignore important gaps in Structure and Process measures that should also be addressed. So, to come back to my football analogy, sometimes as an offense you “take what the defense gives you,” which means to move the ball down the field balancing the chances of meeting your goal (scoring points) with the challenges ahead (putting the ball where the defense is not).

We will be discussing this and more topics related to quality in palliative care at the 4th Annual Quality Matters in Palliative Care Conference streaming online on October 11th. This conference is co-sponsored by the American Academy of Hospice and Palliative Medicine (AAHPM), Center to Advance Palliative Care (CAPC), Palliative Care Quality Network (PCQN), and Global Palliative Care Quality Alliance (GPCQA). Registration and CE are complimentary and registration is encouraged for those who can’t attend that afternoon but want to watch the recording later. For more information and to register, visit http://www.gpcqa.org/qmc

I hope to see you there!

Arif Kamal MD, MBA, MHS (@arifkamalmd) is a youth soccer coach for his six-year old and professional beach bum. In his spare time he studies quality and workforce issues in palliative care.

Friday, October 5, 2018 by Pallimed Editor ·

Wednesday, October 3, 2018

On the Importance of Mental Health Check-Ups for Palliative Care Clinicians

by Polly Chester

As silly as this may sound to people who have never experienced a mental health issue, when one is used to a dystopian inner world, feeling happy for a consistent period of time can be a bit of a worry. For those of us who’ve had mental health concerns in the past and a baseline mental state that just allows us to lurch through life in a state of veritable chaos, calm and pleasant periods of time are a source of anxiety because we wonder if the next mental health calamity is just around the corner. One might consider psychological temperature-taking should be done just like going to your general practitioner (GP) once a year for a physical exam. However, just as many avoid the GP for fear of finding physical health problems, the same fear may prevent us from considering mental health check-ups.

Recently, I decided to treat myself to a mental health check-up because I felt like I’d been avoiding it. Since my mother died from aggressive metastatic small cell lung cancer last year, I threw myself back into life as best I could; maybe a bit harder than I’d meant to. I didn’t just go back to my previous teaching and lecturing three weeks after my mum’s death, in addition, exactly six months after that day, I also started a new clinical role – specialist palliative care social work in a local hospital. Advice from relatives and friends rang in my ears: “Be careful and make sure you access mental health support - I found that I threw myself into too much study and work after my mum died” and “It might be too soon for palliative care practice – six months is the minimum time you should wait after a death for a big change like that”.

But I did not listen, did I? It could have been my workhorse ethic or my fear of missing out (FOMO) on professional opportunities that lead me to do six months’ worth of 50-hour weeks, and predictably pay for it with a breakdown halfway through the year. I was totally exhausted, but there was an eerily calm surface on the emotional waters where I’d expected a violent storm. I’d just spent six months developing a specialist model of care for social workers in palliative care and met dozens of incarnations of my mother - people who had gone from feeling ostensibly well and completely ignorant of their cancer to a terminal diagnosis within a matter of days or weeks. I couldn’t understand why I was feeling so… unaffected. I cared deeply about every patient who came into the ward and felt immensely privileged to be of practical help in some way, but I wasn’t feeling retraumatised by seeing so much death and this came as a surprise to me. So, this is really what brought me back to the psychologist – had I accidentally turned into an unemotional sociopath during the past year?

She’s a sensible woman, my psychologist, very compassionate and warm but also not afraid to point out when I’m talking nonsense. There were two key points that came from our discussion. Firstly, that the reason I wasn’t reacting to every patient’s death in the same way I had reacted to my mother’s death was because I’d properly integrated the experience of the trauma. During the first six months of my work, as I quietly worked with grieving families I had felt a bit guilty, like I wasn’t responding to death properly – with the sadness that each one deserved. This feeling was reinforced by all the families of patients who were baffled by how the team and I could do the work that we do every day without going insane with sadness. How you manage your recovery following a grief experience really is all down to properly taking care of yourself during; feeling everything that needs to be felt, acknowledging the reality and the ubiquity of change; of endings and beginnings, and letting yourself grow around these. Grief - whether it be for a person, place, object, feeling, body part or function - doesn’t shrink or disappear – you absorb it.

With respect to assimilating profound emotional experiences, with every one, I visualise my heart muscle developing another layer. It’s not an airy-fairy, conceptual love-heart. I imagine the functional one in my chest, taking up more space than before and pulsating with even more energy with every experience extreme loss or joy because it is these contrasting experiences that give life colour, shape and texture, and build resilience. I have found these experiences have led to feelings of vitality and a more compassionate way of being with people. I still get tired; get deeply annoyed at hard-right politicians; get PMS; get anxious about having too many social activities in a weekend; get irritated when I accidentally buy a mouldy potato or have to queue for too long for my Hare Krishna takeaway food on a Friday night. But overall, these kinds of things don’t get me fired up as much as they would have a couple of years ago, and for nowhere near as long. Experiencing profound grief and loss, when it’s been processed safely and properly, can lead to great gains in emotional maturity.

Which brings me to my second key point – how I avoided coming to see her because I was a afraid I might break the spell and go back to where I was before. Through our discussions I learned one must never be afraid to revisit pain and that fear can block capacity for critical self-reflection and therefore prevent growth. I realised I wasn’t just afraid to get a mental health check-up – I was actually a bit afraid to talk about any of my past pain because I was in a better and different space now and therefore found it embarrassing; I was afraid that talking about it would re-invigorate some mental health issues, or officiate my imagined sociopathy; that I’d done the wrong thing by engaging in doing the work that I now do. This was why it was so important for me to talk about it, and to continue to talk about it. We don’t learn when we’re comfortable – we learn when we are scrambling over edge of what we’re are capable of into something new. We must never fear what we were in the past, because it’s those failures that make us who we are.

So, in summary, my mental health check-up revealed that I’m still a chronic over-thinker and hopefully a bit wiser than I once was. We’re all about as ordinary and complex as each other; just muddling through life with the resources and opportunities we’ve been bestowed by our genes and the environment. To make the most of life and to ensure you’re processing the bizarreness of it all, occasionally bouncing things off a psychologist just to keep it real is really not a bad idea.

Polly Chester, B.Soc.Wk, is a clinical palliative care social worker and academic, living and working on the Gold Coast in Australia. Up until 2018, when she took on too many different jobs at the same time, Polly used to write and publish blogs on a regular basis, and hopes to re-establish regular writing practices again in the near future. Primary research interests include implementing complex interventions in health practice and improving interprofessional practice approaches in palliative care multidisciplinary teams.

Wednesday, October 3, 2018 by Pallimed Editor ·

Monday, October 1, 2018

Challenges Faced by Blended Families at End of Life

by Lizzy Miles (@lizzymiles_MSW)

As with all my articles, I need to acknowledge that I’m still learning always.  Because of the nature of my job as a float social worker, every patient and family is new to me every day. I have to rely significantly on others’ charting and I have to make sure my own is tip top. For patients who are new to hospice, I make it a special point to learn the nuances of their family dynamic so that I can pass the information on to the care team. There is a fine line between with getting the details and not getting mired down in detail. Ultimately, the key is really paying attention to language.

These days it is common to work with families in which both the patient and spouse are on their second marriage and both have children from previous marriages. Blended families can be beautiful as they can represent a fractured family becoming whole again in a new way. Remember the Brady Bunch? Double the family, double the love.

However, when blended families have conflict at the end of life, it can complicate everything from caregiving to funeral planning.

ON LANGUAGE AND RELATIONSHIPS
For blended families, there are “technical” relationship identifiers and “perceived” relationship identifiers. You may wonder why you would need to clarify the difference, and there are a couple of different reasons.

1.  If there is no designated health care power of attorney (POA), state laws for surrogate decision-making focus on biological relations, and by default step-family are further down the line or even excluded. Even if there is POA, many funeral homes often depend on next-of-kin hierarchy.

2.  The step-relationship may come in to play in regards to caregiving support these family members choose to offer.

Intervention: Be cautious when referencing a relationship as it was previously identified in charting. Other clinicians don’t always make the distinction.

The clinician may have charted “Dad” when the family member is actually “stepdad.” Alternatively, the clinician may have charted “step-sister” without acknowledging the family uses the “sister” label.

I had one daughter who referred to both her dad and her stepdad as “dad.”  No other clinician understood that the primary caregiver “dad” was technically a stepdad.

Perception of “step” may vary within a family. Sometimes feelings about relationships are not mutual.

The age of the sibling might affect their use of the label. I’ve seen older children from the first marriage identify younger step-siblings with the “step” label, while younger children only ever knew and talked about the older ones as “siblings.”

On the subject of grandchildren, a daughter-in-law once “assisted” my conversation with a patient by asking how many grandchildren she had. I never ask the question because numbers challenge the memory. The patient gave a number that only reflected her biological grandchildren which angered the daughter-in-law who had children from a previous marriage. I then was a helpless witness to a 20 minute argument in which the patient was adamant that the step-grandchildren didn’t “count” and the daughter-in-law was visibly upset.

A step-mom may consider her step-children as “children” but if the children are still connected to their biological mom, there is a possibility that the feeling is not mutual.

Intervention: In your own documentation, be clear and distinct with family preferences for labels. 
For example, you could say something like, “The youngest two are technically step-sisters, but family members do not use the “step” identification.”

Be sure to also chart any sensitive areas on the topic, as with the example about the grandmother.

Intervention: Use language the way they do. 
If you’re talking to someone who clearly delineates within the family, reference “step-sister” or better, yet, use the person’s name. If a child thinks of their stepdad as “dad” then use the word “dad.”

ON CAREGIVING AT HOME AND BLENDED FAMILIES
One cannot make assumptions about how a person will be a caregiver based on their familial relationship to the patient. In a best case scenario, we would see the whole family supporting one another and equally sharing the burden. Unfortunately this is not always the case. A few years ago I wrote about how to navigate working with a reluctant caregiver. At the time, though, the dynamics of blended families weren’t completely on my radar.

One blended family challenge is the situation in which a patient is part of a couple that is on their second marriage and patient and caregiver each have children from prior marriages. You could have a combined total of ten children and still no one helping the spouse. The children of the caregiver don’t feel an affinity towards the patient, and the children of the patient do not feel that they need to be the ones to relieve the caregiver. These may seem like stereotypes. They are, and they do not apply to all blended families. This article, however, is addressing situations in which the family system is not working smoothly and is an attempt to explore how we, as professionals, approach these situations.

Alternatively, in some blended family situations, it is one or more of the children who are the primary caregivers and the second spouse is the one who is the reluctant caregiver.
While you want to have an awareness of family dynamics, you do not want to have a position on them. It would be very easy to side with the caregiver who is involved and complaining about others who are not involved. But you don’t know the history of the family and their relationships.

Intervention: First of all, stay out of the mud slinging
Provide supportive listening, but do not take sides. Who is right or wrong is not our place to say.
Don't say, “What a jerk!” Do say, “It sounds like you’re disappointed that he is not more involved in the care.” Document objectively any family dynamics that could affect care.

Intervention: Be solution focused
While we want to provide supportive listening to a family member who is frustrated with a caregiving situation, we also need to redirect focus to the reality of the situation at hand and what we can actually do to ensure the patient is getting good care and the caregiver is supported.

Intervention: Complete HCPOA
If the patient is still oriented and does not yet have a health care power of attorney, encourage them to complete this document. Ask them who they want their primary decision-maker to be. Do not assume it will be their spouse. Be clear with patient and family that without the document, though, the spouse is the primary decision maker in the event patient is no longer able to speak for themselves. When a patient has only been married a few years or less and the children are well into middle age, the spouse’s authority can sometimes be a point of conflict.

Intervention: Have a family meeting focused on goals of care
If family members are involved but disagree on care, encourage everyone to get together at the same time to discuss goals of care. This should be centered on what the patient wants. In an ideal world, the meeting would involve the patient, the whole hospice team and all involved family members. For families providing care at home, at a minimum, the nurse and social worker should both be there. There might be medical questions for the nurse to answer, and social workers have more training in group dynamics and facilitation.

Intervention: Assist with communication and language
Assist the primary caregiver with phrases that he or she can use to ask for help. Sometimes the family can get so caught up in the dynamics of a relationship that they don’t know how to ask for what they need. They may have a habit of accusing someone of not being around enough, but complaining in itself isn’t effective.

I always tell caregivers that it is easier for others to agree to help them if they are specific in their request. I would work with them to find out what their biggest needs are and then help them phrase the “ask.”   I might suggest they say something like, “It would be helpful to have a weekly two hour block of time that I can count on to run errands. I don’t feel comfortable leaving [patient] alone. Is there a time when you might be able to come over to relieve me?”

Advice for you: Help with what you can, let go of the rest
As you are working with challenging families, you may find yourself frustrated by situations that you can’t fix. If this happens and you find yourself having an adverse reaction to a family situation, take a step back to explore your response.

For more articles by Lizzy Miles, click here. For more articles about communication, click here. For more articles about social work, click here.

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. She is currently funding her fourth Kickstarter campaign Hora Fugit which seeks to send willing participants gentle postcard reminders of their mortality. You can find her on Twitter @LizzyMiles_MSW.

Photos via Unsplash- Ink by rawpixel; Dad's Keys by Hope House Press; Mugs by Worthy of Elegance

Monday, October 1, 2018 by Lizzy Miles ·

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