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Tuesday
Oct252016

New WHO Guidance on Planning & Implementing Palliative Care: What Should Chaplains Know?

As many know, in May 2014, the World Health Organization (WHO) adopted an extensive new document (WHA 67.19) on palliative care that among other landmarks included spiritual care for the first time. Now, as is customary for WHO, they have issued a guidance document for those in the 192 member countries of the WHO to help them roll out palliative care in their countries. (Planning and implementing palliative care services: a guide for programme managers. (http:// www.who.int)

This is a hugely important document for all palliative care providers including spiritual care providers. It reaffirms WHO's stand that palliative care is not just a "nice to have" in health care but a human right. This means that all countries should provide it.

   "Ensuring the accessibility of palliative care is not just an ethical obligation of health systems;         it is also an obligation under international human rights law. The right to palliative care and pain     relief is recognized under the human right to health." (p.6)

For the chaplain reader in North American, it is necessary to understand something about the international context for palliative care in order to understand a lot of why the guide is written the way it is. Readers will notice a significant emphasis on the availability and use of pain relievers- especially opioids. While opioids are maybe too plentiful in the US, they are often very hard to get in many countries because of severe legal restrictions. At the same time in many countries where treatment for diseases like cancer are hard or impossible to obtain, pain relief is all that can be done. As the guide comments on page 6,  "Unfortunately, countries have paid far more attention to their obligation to prevent abuse than to their obligation to ensure access for medical purposes."

For anyone who is at home with the complexities of US health systems, the extensive step-by-step advice on how to set up palliative care in a variety of settings may seem simplistic.  However, in many countries, these models that we often are so used to are rare or unknown.

Finally, chaplain readers will notice that the word, "chaplain" is largely missing. In fact, it is only used once, incongruously, in the list of recommended staff for pediatric palliative staff. The point to remember is that, in most of the world, "chaplain" is far less known than even in North America and Europe. The term does not even have an equivalent in many languages. More importantly, providing trained chaplains is not a model that probably most countries in the WHO can aspire to. Maybe the major challenge for spiritual care providers is how to provide what we would call "specialist" spiritual care as part of palliative care in these contexts.

That all said, the guide makes very clear that spiritual care is to be a part of the palliative care that is required. "Spiritual" is used over thirty times. On page 12, the guide states" Spiritual distress and existential concerns should be treated with the same level of intensity and priority as psychosocial and physical distress or pain. Support may involve a spiritual carer." Spiritual care is not a second-class citizen.

  "Spiritual care should be provided to patients (page 9) families (page 13) and 'professionals             providing care (including self'" (page 10)

    "Palliative care services should, therefore, at a minimum: .... assess and reassess patients for        physical, emotional, social and spiritual distress and   (re)assess family members for emotional,      social, orspiritual distress; ..address spiritual, psychological and social needs;" (page 9)

    "Spiritual "understanding" is described as one of the core tasks of the palliative team (page 60       and discussion of "spiritual suffering" is part of the sample curriculum for training all staff."             (page 87)

Thus the mandate to include spiritual care is quite emphatic and all encompassing. What is beyond the scope of this guide and seems to be the challenge for us in professional chaplaincy to come up with answers to are issues like:

            If professional chaplains are largely not an option, who are these "spiritual    carers" on the team going     to be?

            Where are they going to come from?

            How are they going to be trained?

            How is this training going to be delivered often over vast distances?

Answering these questions presents a colossal challenge but also a colossal opportunity to impact spiritual care around the world.  The WHO has set the bar but much is left to be done.

We in chaplaincy and spiritual care are seriously indebted to a large number of those listed in the acknowledgments who have long championed the inclusion of spiritual care in palliative care and who have yet again carried this inclusion forward.  Those best known to the US audience would include Kathy Foley, Diane Meier and Christina Puchalski but I personally know a number of others in the group who undoubtedly supported this inclusion as well. 

 

Tuesday
Oct182016

Understaffing in Palliative Care

When the National Consensus Project for Quality Palliative Care released the third edition of its Clinical Practice Guidelines for Quality Palliative Care in 2013, Dr. Betty Ferrell who co-led the project said that any hospital that is not including all eight domains of the Guidelines is not doing palliative care. Note that the word “good” is missing here intentionally. Her meaning is that what you are doing should not be called palliative care if you do not include all eight domains- one of which covers spiritual, religious and existential concerns. The Guidelines call specifically for the inclusion of a "spiritual care professional" on the team. The Joint Commission's Standards for Advanced Certification for Palliative Care includes a chaplain as one of the four required members of the palliative care team.

However, a study just published in Health Affairs reports that using the Joint Commission staffing standards "only 25 percent of participating programs met that standard based on funded positions, and even when unfunded positions were included, only 39 percent of programs met the standard." [i]  The study points out that many programs do not have a physician assigned and rely on an advance practice nurse.

Another related issue is burnout among palliative care staff which Dr. Tony Back and colleagues have pointed out in their recent article appears to be higher among palliative care staff than among other medical disciplines.[ii] Part of the stress, of course, is from understaffing. This stressor can cause turnover, poor team functioning and, of course, substandard care.

In any case, this issue is important to chaplains because the part of palliative care that I see most often understaffed and underrepresented is spiritual care/chaplaincy. Many hospitals say they do palliative care which implies they take care of the spiritual dimension when, in fact, they do not or they do so only minimally. They have access to a chaplain but they do not have a chaplain integrated into the team, and certainly do not support a chaplain out of the palliative care budget.

So what to do?

1. We as chaplains should be supporting all efforts to increase palliative care staffing in all disciplines, and all efforts to increase training sites for palliative care physicians and nurses as championed by the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Care Nurses Association. More well educated palliative care doctors and nurses means more doctors and nurses who understand the role of spiritual care in palliative care- and better care for patients generally.

2. We need to be active in helping develop measures of quality for spiritual care in palliative care. Currently, as I've written elsewhere, the National Quality Forum (NQF)  has only one approved measure in spiritual care and that covers only hospice care, not the rest of palliative care. The NQF does not develop measures. It only evaluates measures submitted to it. Since chaplains are the spiritual care leads on the team, it is up to us to lead in developing more measures to demonstrate the importance and power of spiritual care in health care.

3. We need to be constant and aggressive in advocating for more palliative care staff in our institutions. This includes understanding the research that supports palliative care in general and spiritual care in particular.

The literature supporting the effect of palliative care on satisfaction, QOL and use of health care resources is robust and growing.  All models supporting it also support the inclusion of spiritual care. However, as this study demonstrates, just having a study or a guideline does not make something happen. It happens when people who believe in palliative care take this evidence and use it to advocate for better care.

 


[i] Spetz, J., Dudley, N., Trupin, L., Rogers, M., Meier, D. E., & Dumanovsky, T. (2016). Few Hospital Palliative Care Programs Meet National Staffing Recommendations. Health Affairs, 35(9), 1690-1697.

 [ii] Back, A., Steinhauser, K., Kamal, A., & Jackson, V., (2016). Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors. J of Pain & Symptom Management, 52(2), 284-291.

 

 

Tuesday
May172016

Implications for Spiritual Care from Recent National Quality Forum Meeting

The National Quality Forum (NQF) is a not-for-profit, nonpartisan, membership-based organization that works to catalyze improvements in healthcare. One of NQF's activities is to convene multistakeholder Standing Committees in topical areas that are charged to review and recommend submitted quality measures for endorsement to NQF’s Consensus Standards Approval Committee (CSAC). NQF endorsement is often a stepping-stone to inclusion on federally required data sets for various levels of health care providers.  These data sets are often tied to reimbursement for those providers. So this endorsement is a big deal.

Recently, Chaplain Margie Atkinson, the current President of the Association of Professional Chaplains (APC) and I were appointed to the End of Life and Palliative Care Standing Committee. It is important to note that while we were nominated by APC and HCCN respectively through both organizations’ membership on the National Coalition for Hospice and Palliative Care, we serve because the NQF staff judged that each of us is qualified to sit on the committee. We do not represent our nominating organizations nor do any organizations have any allocated seats on any standing committee.

Over the years, I have occasionally heard several questions raised within chaplaincy about NQF and why spiritual care and chaplaincy were not represented in its membership or in the measures it endorses.

The membership question is fairly simple. Only NQF member organizations can nominate people to the committees and being a member is very expensive. HCCN and APC get to nominate because both organizations are members of the Coalition that in turn is a member of NQF.  The Coalition submitted a number of nominations in this round many of which were accepted, but some were not.

The question of why there are not NQF endorsed spiritual care measures is also simple in a way. NQF does not itself develop measures. It only considers measures for endorsement that are submitted to it. Further, to be endorsed, measures must satisfy a number of very extensive and very rigidly applied criteria including (1) evidence that the measure improves some specific health care outcomes (2) evidence that the measure measures what it claims to measure and (3) evidence that the measure reliably measures what it claims to measure the same way for everyone, every time. Exceptions to (1) are possible at least at the beginning of the measure's use. The one spiritual care measure of the 35 currently endorsed in EOL and Palliative Care is, in fact, endorsed as an exception and it was not submitted by chaplains but by a research group at Univ. of North Carolina. One result of this gap is that spiritual need and spiritual care are not measured in most required data sets. Thus, one of the major motivators for organizations to integrate spiritual care is missing.

So what do chaplains need to do to remedy this situation? The place that most measurement efforts start is with screening measures that are then paired with treatment measures. By example, one endorsed measure reports the percentage of people admitted to hospice who are screened for pain. The paired measure reports the percentage of people admitted to hospice who screen positive for pain who then are treated for their pain.

Using a chaplaincy example, it might be reasonable to start by proposing the Rush spiritual screening protocol that has some validity testing already done. What would be needed in addition is (1) significantly more validity and reliability testing and (2) research evidence that using the Rush improves some particular health outcomes. It is important to note here that demonstrating that treating spiritual distress improves health outcomes is a contribution and some of that evidence does exist but this evidence is not sufficient for NQF endorsement. The evidence must demonstrate that doing the screening itself leads to improved outcomes.  

It is certainly true that few chaplains have the ability or resources on their own to do this kind of research. However, many have the ability to advocate for this kind of research in their institutions and lend their expertise to the projects. The reality is that unless and until this kind of effort occurs in our field, except in a very few instances, spiritual care quality measures will not take the place they need to occupy to help move spiritual care integration in health care forward.

 

 

 

Thursday
May122016

Moving the Profession Forward: Being a Leader in the Spiritual Care Association

For those who don't know me or haven't known me long-- a little of my professional history. I have been a staff member of what is now HealthCare Chaplaincy Network (HCCN) since 1978 and certified by what is now the Association of Professional Chaplains (APC) since 1979.  I've served the APC as Chair of Education, State Certification Chair for NY, Chair of Certification, and President. I helped produce Professional Chaplaincy: Its Role and Importance in Healthcare (aka the White Paper) and chaired the project that produced Common Standards. I was awarded the Anton Boisen Award by the APC in 2011. And now I am the Director of Certification and Credentialing for HCCN's newly announced affiliate, the Spiritual Care Association (SCA) and I was centrally involved in helping design SCA, especially the certification standards, from the beginning of our discussions.

I know that many of my colleagues of many years are some place between mystified and outraged that SCA exists and has taken some of the positions it has, especially in regard to certification. So why am I completely behind it and involved in leading it?

Maybe clarifying a couple of oft-asked questions. Why not work with the current chaplaincy associations? The truth is I've been doing that for a very long time.  I hoped that both the White Paper and Common Standards would jump start the APC in particular into leading the field forward. It didn't happen. Common Standards was never even meant to be a statement of what makes a chaplain competent. It was meant to be what its title suggests- the standards the associations held in common at the time. It was never meant to be the end but the beginning of a journey toward having competent chaplains. But it turned out to be an end. Increasingly I hear health care administrators sharing their frustration that hiring a BCC does not reliably get them the quality of chaplain they need. In other words, the certification process is not doing its job. Just speaking with one voice was good enough in 2004. It is not good enough today.  And my judgment after years of trying is that the APC (and the ACPE, NACC, and NAJC) show no willingness to even consider making the changes needed.

Why form a new association? We need less not more. I completely agree with the latter statement. However, what we need more than fewer associations is a certification process that reliably and demonstrably produces chaplains who can deliver quality chaplaincy care where quality is defined by very specific and widely accepted indicators and deliverables. In this way, those who hire chaplains will know exactly what the chaplains they hire will be able to deliver because they have the competencies linked to those indicators. It is becoming clear to me that we have to do this and do it soon. Already, a survey we just conducted indicates the number of hospitals employing professional chaplains has not grown since 2004.  Our Quality Indicators document and new certification process have drawn rave reviews from many health care administrators and payers.

Why lower the standards for certification? The bar to become certified is not lower but higher. The SCA certification boils down simply to if you can prove through an objective testing process that you can do the things clinically that professional health care chaplains need to do and know what experts in the field think professional chaplains need to know, you should be certified. But that bar cannot and will not be low. If ordination and endorsement helps you be that chaplain as it does for me, then you should have it. If it has no meaning for you, then you shouldn't be required to have it. If you can demonstrate competence after two units of CPE, then you should have the opportunity to do that. If you need four units or six units (as I did) to reach a level where you can demonstrate competence, then that is what you are going to have to do.

How does the SCA know that this is the way to go? We don't for sure. What we do know is (1) what we propose meets needs that we hear coming from the health industry (2) it is consistent with the evidence as we now know it (3) it conforms to the best practice of other disciplines such as medicine and nursing (4) it has the capacity to verifiably deliver value (5) and it has the capacity to be continually tested, improved as indicated, and adjusted to meet changing needs.

I would love nothing better than for the current certifying bodies to join us in this effort and to bring their resources to bear on moving our field forward. A number of groups have reached out and we are engaged in some very productive conversations. Sadly for me as an APC Past President, the APC has chosen to defend the current system without any evidence that it is accomplishing its goals, not engage the issues we have raised, and worse, has not returned our phone calls.

So I have no choice. I am a loyal member of the APC and will remain so. I will do anything the APC leadership invites me to do to help it better serve its members and more importantly the patients, families and staff that those members care for. But I will not wait for that day to come. At the end of the day, this is not about associations or endorsers or who has what or what we want for ourselves. It is about giving patients, caregivers and institutions the best quality spiritual care we can give now. The time is past for yet another strategic planning process, restructuring or set of consultations. It is time for action to better serve our patients and loved ones. 

Friday
Apr152016

Hearing the Voice of the Patient

Much is made these days of hearing and including the "voice of the patient" in the conduct of health care. To be clear, on the whole I think this is a great move and long overdue. It has been long missing from health care in some very basic ways. For a long time, we thought that the doctor's determination of what degree of physical pain the patient was in should be the driver of decisions about medication as opposed to what the patient reported to be their pain level. Then we found out that the medical professional's perception was wildly inaccurate most of the time and the patient's self-report was generally spot on.

So, these days, it is almost scandalous to suggest that patients and their family caregivers should not be consulted and included in deciding on their care. Many of us are advocating models in which the patient actually sits in on the team's care planning rather than the team having discussions without the patient and then bringing the patient into the conversation to "discuss" the plan the team has already decided on.

However, as with most conditions in life, this one comes with some consequences that many didn't anticipate and some providers don't necessarily like. For example, many providers who have supported patient involvement and starting the planning with patient and family values generally are in favor of less aggressive care when the medical judgment is that the treatment is most likely to not extend life and/or to lower quality of life. However, what about the patient or family who wants "everything done" even in the face of the unanimous medical judgment that aggressive care is futile? If we are true to the idea of listening to the voice of the patient, we are obliged to provide aggressive care at least within the bounds of normal professional ethics. This is uncomfortable for many providers who are then tempted to resist the patient's expressed wishes.

And what about the patient and family who is not "like us"? The vast majority of health care providers are educated, highly health literate, and have some degree of financial and social resources. While I'm fully supportive of any and all attempts to promote health literacy, I wince when I hear otherwise compassionate providers discount a particular patient's input because "they don't understand" which is code for lack of health literacy. And what about the patient whose beliefs conflict with recommended treatment? I have never heard of a chaplain being called to intervene with a patient whose beliefs supported the treatment decision the team was recommending but we are often called to "help" a patient or family whose religious beliefs are in conflict with what the treatment the team is recommending.

Now granted, there are limits to the treatment patients and especially surrogates ought to be allowed to demand or refuse. Dr. Harvey Chochinov has recently written about what he argues to be the lack of protection for children and the mentally ill in the currently debated Canadian physician assisted death law. I am clear that patients should not be allowed to make decisions that put others at risk- from infectious diseases for instance.

However, those conditions need to be viewed as carefully considered exceptions to the general rule. Otherwise, the idea that the voice of the patient is always included needs to be followed by "except when the providers find it inconvenient or offensive or against their own beliefs". No right is absolute but they are called "rights" because they are granted except in very well defined circumstance.

I think it can be argued that listening to our patients and understanding how they want their care conducted is the most important thing we as health care providers do. We need to be extremely vigilance to recognize and call out any discounting of that voice.