Steps toward integrative palliative care in the developing world

This was previously published by the Design for All Institute of India

Steps toward integrative palliative care in the developing world

Thomas Ask, John Boll, Alexander Nesbitt

Abstract

Treatment for suffering in low resource areas can benefit from easy access to medicines that treat pain, gasping, terminal secretions, nausea, anxiety, and delirium.  Because suffering needs to be contextualized within prevailing cultural forces, individuals with communal connections with the patients must be empowered to administer these medications and provide caregiving services.

Additionally, developing low cost medical dispensing systems allows a wider range of treatment.  Artificial intelligence can be coupled to voice recognition for both patient diagnosis and medical products to improve efficacy of treatment.

 Introduction

Design can address complex problems through inquiry, synthesis and creative exploration.  Problems that lie outside mechanistic solutions are fertile areas for design processes that strive to creatively motivate improvements.  Improving healthcare is a type of problem that challenges deductive logic and benefits from ‘design thinking’.   This inquiry recognizes the resource driven model of healthcare has overwhelmed the relational needs required for palliative patient care.  This article wishes to extend the medical discourse beyond the well understood effects of disease and the positivistic validations of pharmacology.  While it is presumptuous for those steeped in US medical traditions to assert appropriate systems of palliative care in the developing world, this reflection on palliative treatment intends to offer a different perspective that appropriate local decision makers may find helpful.

Palliative care can consider three tracks: medical, relational and spiritual.  The medical realm can include adjuncts to pharmaceuticals while the relational can cover areas of concern ranging from the relationship between caregiver and patient to the effect of patient pain and psychosis on family members.  The spiritual realm addresses deeply held beliefs about the patient’s relationship to a deity in their faith tradition.

Background

Reducing suffering requires identifying a cultural framework that connects pain and suffering.  The acceptance of pain and the expectations of palliative care requires a subjectivist, interpretive epistemology. This epistemology draws upon the humanist arguments against exclusive positivistic approaches that highlight limitations of the scientific method and its inappropriateness for assessing human thought and actions (Feyerabend 1993).

A theoretical construct for understating the relational component of palliative care, beyond pharmaceutical approaches, lies with the integration of psychological and sociological theories. The identity theories, along with the phenomenological perspective of an ideal self, suggest that when people identify as part of a group they will deeply nurture each other’s attributes that tend to maintain the group identity.  Motivation for the cooperative exercise of caretaking can be founded on the development of an identity associated with a group. The identity theory asserts that one’s self-esteem is derived from the identity developed from social interactions. The sense of self is based on the roles that one assumes in a society or group with which one identifies (West 2014, Stets and Burke 2000).  A shared group identity can promote a desire to protect against those in other groups.

 Pain is connected to both social and individual identification.  Illich notes:

Pain is shaped by culture into a question that can be expressed in words, cries, and gestures, which are often recognized as desperate attempts to share the utter confused loneliness in which pain is experienced (Illich 1976, p. 140).

Reducing pain and suffering is more complex than medicinal treatment.  Addressing palliation requires deference to cultural motivators, self-identity and other powerful, foundational forces.  An effective system for palliative care moves beyond medicine and includes encouragement of relationally-rooted interaction between the patient and caregiver as well as spiritual nurturing. The caregiver’s personal connection with the patient is a key factor in reducing patient anxiety and maintaining patient dignity.  This caregiver relationship is especially important for terminally ill patients.  The medical treatment considers medication appropriate for treating pain, gasping, terminal secretions, nausea, anxiety, and delirium.

 

Clinical pain in the developing world

Pain is the most commonly feared symptom listed by individuals contemplating their eventual terminal illness and death. Unfortunately, throughout much of the developing world, this fear is realized daily by hundreds of thousands of people. The World Health Organization estimates that more than 30 million people each year are in need of care to support them and palliate their symptoms during their terminal illness, but the vast majority cannot get this care. Millions suffer from untreated pain annually.  This includes more than 5.5 million who die from cancer and more than one million from end stage AIDS (NGO 2011).  Opioids are one essential class of medication to treat such pain, but access to these medications is very limited in much of the developing world. Efforts to improve appropriate access to this class of medications is an important part of the worldwide palliative care movement.  In addition, increasing access to non-opioid medications and non-medication analgesic measures is also an important component in the effort to reduce worldwide suffering in the sick and terminally ill.

Comfort kit

In established palliative care systems, providing patients with an emergency symptom kit (or 'comfort kit') is a routine component of preparing for the common forms of suffering which afflict humans contending with advanced illness. The most common such symptoms are pain, dyspnea (air hunger), nausea and vomiting, delirium (an acute confusional state) and anxiety.  Medications that are commonly included to treat these symptoms include non-opioid pain medications (such as paracetamol or diclofenac), anti-anxiety medication (such as lorazepam or diazepam), anti-emetic (vomiting) medications (such as prochlorperazine), and anti-psychotic medications (such as haloperidol). Some such packs also include anticholinergic medications to treat the terminal secretions ('the death rattle') that often accompanies the terminal state. Provision of a comfort kit including these inexpensive medications alone, or even better, including simple commonly needed care items such as simple dressings, a urinal, and perhaps antibiotic ointment, would greatly enhance the comfort and the dignity for those who are ill and suffering.

Interpersonal relations

Medical practitioners typically enroll medications to ameliorate acute symptoms.  However, the notion of pain is contextual and culturally moderated.  Therefore, palliative care must rely most deeply upon the personal relationship between the caregiver and patient.  The patient must conclude that the caregiver understands the patient’s suffering.  The caregiver must ask the question, “What would you most like me to know about you so that I can take care of you?”  This inquiry is easy to present in the abstract but the patient – caregiver relationship is an entanglement comprised of a web of values, history, social norms, and regulatory requirements. 

A caregiver will never fully understand their patient’s suffering but must rely upon a deeply held sense of personal responsibility in treating and comforting the patient.  This type of relationship is more naturally derived from family relationships than from the medical community.  In addition, the patient’s expectations can motivate the approach to palliation. Consequently, the attending physician must understand:

• ·         Social and cultural norms.
• ·         Pain is contextual and subjective.
• ·         Patient recognizes not all suffering will be lifted.
• ·         Relationship between patient and caregivers.
• ·         Effect of illness on family.

Spiritual

Faith traditions are important in contextualizing suffering and identifying a purpose to pain.  Given that the experience of suffering frequently challenges the core of an individual such faith traditions can be an important aspect of providing care both to the patient and their family.  Through the values and meaning in a faith tradition suffering can represent a means to develop character and hope in the midst of an illness.  Alternatively, patients can believe the purpose of their pain is for discipline or correction or an indiscernible purpose but still governed by their deity.  Therefore, addressing the spiritual can be an important part of palliation and subsequent comfort for the suffering individual.

 Artificial Intelligence

Artificial intelligence (AI) can democratize access to patient assessment and guide dispensation of medicine.  Computing systems incorporate AI, such as expert systems and artificial neural networks, that strive to model human thought in a manner that can be processed on a computer and accessed by a non-expert user.  However, sharing human knowledge and expertise is a difficult task.  People use very sophisticated and intricate thought processes to solve problems, recall information, and make decisions.  Although expert systems are an excellent technology to save and disseminate knowledge, transferring that knowledge from the domain expert to the computer is difficult.  Acquiring knowledge for an expert system is the art of structuring human instincts, experience, heuristics (“rules of thumb"), guesswork and all the other words which never can quite explain the human thought process.  Expert systems use fuzzy logic to make decisions.  That is, the confidence of an output is quantified and that value can be handled separately from the output.  The confidence output is then used in determining the best, final decision of the expert system.  The combination of outputs and the confidence associated with them adds intelligence to the system.  In this way the “degree of truth” of information can be managed. 

Neural networks use a large number of processors with each artificial neuron dedicated to a specific task.  The neural networks organize the links between inputs, outputs and hidden intermediate layers of decision making.  Sensory or database information is fed through this network with each neuron processing the data independently and progressing its results through the network.  Generally, a feed forward approach is used where information flows from the input neurons, through the intermediate neurons and finally to the output without a feedback mechanism.  In this manner, large amounts of information are processed to identify relationships and therefore create a dynamic algorithm that can accurately develop conclusions from salient inputs.

Voice recognition is often coupled with AI allowing computing systems to recognize natural language usage and discern emotion.  AI driven voice recognition allows simplified access to computing power.  Currently voice systems are more than 97 percent accurate in identifying individual words and are being quickly implemented due to commercial interests (Brown 2016).  However, reliance upon AI driven voice recognition has potential problems with error and abuse.

Systemic approaches

Improving the quality of life for people contending with the symptoms of serious illness requires the care best offered through those who have a personal connection to the patient.  Medical approaches typically involve a professional caregiving team who develop and execute a plan of care (Ferris 2002).  However, where this resource intensive approach is not possible, a system of palliative care requires altruistic volunteers to provide treatment and personal support for the patient. These volunteers are educated and authorized to give support, evaluate and treat using prescribed protocols.  The volunteers are given comfort kits through the medical establishment.  If a volunteer from a family, community, or religious group is unable to provide care, a paraprofessional would need to be engaged; however, this is not the optimal arrangement because the altruism becomes distorted by financial forces.

The comfort kit would need to be issued specifically for one patient; however, the comfort kits have value and therefore present potential for misuse.  The contents could be resold, which is the most direct problem with the effective distribution of comfort kits.  In addition to financial gain, the distribution system provides power over the patient that could be misused.  Additionally, administration of medicine could be met by resistance within the medical establishment as well as social forces that resist a lay person’s ability to dispense medicine.  Control of medicine delivery could be addressed by technical solutions such as time release containers, drone deliveries or other ‘just in time’ systems.   However, these delivery systems are vulnerable to theft and abuse.

Caregiver training and adjuncts can improve suitability of treatment.  The caregiver adjuncts can range from video supervision by a physician to cards with photographs and corresponding treatment protocols.  The medical community must recognize untreated, acute pain can develop into chronic pain.  Therefore, aggressive treatment of acute pain through opioid and other medicines is recommended so that chronic pain will be reduced.

Future approaches

While relationships and spiritual connections will always be key components of palliative care, mechanistic designs can provide helpful improvements.  These can range from AI guided medicine dispensing systems to human powered refrigeration compressors.  In addition to AI guided and remotely based medical supervision, advanced design approaches would call for low cost/high impact devices.   Some technologies are seemingly difficult to develop such as systems that deter opiate abuses and secure medicine distribution. 

Improvements can be more product specific, such as refrigeration and fluid delivery systems.  If patients have refrigeration available they can store and dispense a broader range of medications   Appropriate technologies may include human powered refrigeration compressors, solid state thermoelectric refrigeration, high thermal mass systems, and minimized volume super-insulated storage systems. Low cost, easy to use fluid and drug delivery systems such as infusional subcutaneous and syringe driver systems would also aid treatment.  Usage of medical products can be facilitated using AI driven voice recognition.  Additionally, drone delivered medicine and radio and video communication allows treatment in remote areas.

Conclusion

Palliative care transcends medicine and technology.  The spiritual and interpersonal relationships infuse into patient care in forms that are difficult to characterize.  However, in low resource or remote populations the administration of medicine and care is best administered by altruistic individuals such as those affiliated with the patient by family, community or religion.  These caregivers need to be richly empowered to provide treatment necessary to address issues of pain, dyspnea, nausea and vomiting, delirium, and anxiety. 

Comfort kits should be provided to these caregivers that would include non-opiate pain killers such as paracetamol and diclofenac.  Other medications would include paracetamol, diclofenac, lorazepam, diazepam, prochlorperazine, and haloperidol.  Other items such as bandaging and a urinal would also be provided. 

Within the realm of product and systems designs, technical advances that allow remote monitoring and AI guidance can provide improved diagnosis and treatment.  Moreover, low cost versions of refrigeration and drug delivery systems will aid in treatment options.  Developing non-addictive pain medicines have been largely unsuccessful; however, customizing pharmaceuticals such as abuse deterrent opiates designed to genomically key to the individual could reduce abuse.

Palliative care in the developing world can be improved by empowering nonmedical personnel who are communally connected with the patient.  These individuals can best answer the question, “What would you most like me to know about you so that I can take care of you?”

 

References

Brown, A. (2016), Talk to Me. American Society of Mechanical Engineers (ASME) Mechanical Engineering, No. 11, 138, Nov. 2016, pp. 32-37.

Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. (2002), A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association.

Feyerabend, P. (1993), Against Method. New York: Verso.

Illich, I. (1976), Medical Nemesis: The expropriation of health. Bantam Books/Random House.

NGO Human Rights Watch, (2011) [Online] Global State of Pain Treatment-Access to Medicines and Palliative Care.

Stets, J. & Burke, P. (2000), Identity Theory and Social Identity Theory. Social Psychology Quarterly 63, 2.

West, R. (2014), “Communities of innovation: Individual, group, and organizational characteristics leading to greater potential for innovation: A 2013 AECT Research & Theory Division Invited Paper.” TechTrends 58.5, (9), pp. 53-61.

Contending with Complex Interdisciplinary Problems using Affinity Congregates

Many innovations come from those in marginal positions in a discipline, and these individuals therefore greatly benefit from the support afforded by like-minded people. James Watson, co-discoverer of the double helix nature of DNA, stated the power of collaboration unequivocally: “Nothing new that is really interesting comes without collaboration”. However, in some groups a dominating person might drive ideation. As discussed previously, group dynamics need to be recognized in group settings. Particularly in the case of new groups, such as in a classroom setting, an affinity congregate allows people to individually express their ideas before becoming engaged in a group situation. This is a small variation of affinity diagraming because affinity congregating focuses on initial, independent problem solving before bringing ideas to a group so that participants may collectively identify affinities. Affinity congregation preserves the independent voice of each student. This approach is intended to prevent group dynamics from taking over the ideation process.

With affinity congregating, the participants are presented with a problem or design prompt, they individually write solutions on a sticky notes or other suitable media. When they are finished writing proposed solutions, the notes are collected and assembled by a moderator and grouped by affinities or themes into an affinity diagram. The themes arise from the data, which is founded on grounded theory. Grounded theory is a method common in the social sciences that allows categories and concepts to develop based exclusively on data and not from predisposed theories.

While these affinity congregations shown by the groupings of notes is subjective, general themes or affinities arise in a logical fashion. A variation of this approach is to have the group identify themes rather than a moderator. In this approach, the group gathers around the notes and identifies logical groupings. The notes are reviewed and duplicate ideas are stacked on top of each other. Finally, the affinities can be discussed and each idea can be critiqued by the group.

Affinity Congregating Technique Summary

1. Problem statement or design prompt.

2. Individuals write proposed solutions on sticky notes.

3. Moderator collects notes and assembles by affinities or themes that arise (affinity diagrams). Alternatively, the group identifies affinities as a team.

4. Duplicates omitted.

5. Group critiques affinities and proposed solutions.

Outcomes of Affinity Congregation

One example of applying this technique to professional practice is addressing the issue of palliative care in the developing world. In this case, I invited two physician colleagues to partner with this investigation. Because we came from different disciplines (design, pain management and palliative care), the congregation technique was used to prevent the board-certified palliative care specialist from overwhelming the pain management expert and the engineer. This cooperation led to identifying four tracks of palliative care: physical, psychological, relational, and spiritual as shown in Figure 4. These tracks were further divided into key concerns and we developed practical treatment options.

In this example, the most common concerns were identified as pain, dyspnea (air hunger), nausea and vomiting, delirium, anxiety, and terminal secretions (‘the death rattle’). The affinity aggregation allowed artificial intelligence driven diagnosis systems to inhabit an equal space as recommending paracetamol or diclofenac for pain relief. This technique worked well in this interdisciplinary environment because we concluded with specific recommendations as well as the somewhat surprising result that the patient care should be the responsibility of a loving caregiver rather than a medical professional.

 

Figure 4 – Integrative palliative care factors.

From:  T. Ask, “Engaging Creativity: Classroom Exercises for Enhancing Engineering Students' Creative Self Identity,” 2019 ASEE Zone I Conference & Workshop, Niagara Falls, NY, USA, April 2019, https://peer.asee.org/33791.

And     T. E. Ask, J. Boll and A. Nesbitt, “Steps towards Integrative Palliative Care in the Developing World,” Design for All Institute of India, Newsletter Vol. 12, No. 3, p. 61, 2017.

 

Medical Care on the Edge

This is our colloquium presentation on pain and palliative care in resource poor areas.

Medical Care on the Edge

Medical Care on the Edge: Redesigning Care Across Cultures

This is a portion of my talk on technology and palliative care. I presented along with two great physicians, Drs. John Boll and Alex Nesbitt.

Let’s first consider the development of both human expertise and technology. If we posit the notion that the ability of medical personnel has improved over time to get closer to some notion of perfection we can also then consider that technology, in a general sense, has improved also. In many cases the technology has helped the doctors, in some cases advances in understanding have helped doctors. However, in the end doctors do not achieve a level of perfection, and technology will never be able to completely replace doctors, which is something we will consider later.

When we consider medical care for resource poor areas we have three approaches: more healthcare providers, technology assisted care, and autonomous care. I want to explore the notions of technology assisted and autonomous care. We can get defensive about autonomous medical care but this inquiry relates to places that don’t enjoy the medical infrastructure that we do.

For example, with a Mars mission, we may have to rely on a lot of technology and minimally trained personal. In Boston, you trip over doctors. We naturally resist technology’s incursion into medical care because people recognize the empathy and sacrificial attributes brought by real people. However, technology can, at the least, assist doctors in diagnoses and the development of a patient care plan.

One element of technology I would like to talk about is artificial intelligence, which mimics human knowledge and cognition. It can use rules of thumb and learning capabilities to make recommendations. It can also include sensing technologies that mimic human abilities from seeing to speaking.

It uses rules of thumb, called heuristics, and confidence factors to come up with a conclusion. That is what these IF/THEN and CF statements represent. But machines can’t handle problems that haven’t been thought of, they can’t think of “what if”.

Some appealing prospects for resource poor areas are to use an artificial intelligence system to suggest a diagnosis and treatment using a dialogue with the health care provider or family member, which I will call the “small black box”. A grander approach is to use a system of AI that learns about the patient over time, often called deep learning, as well as other inputs. I will call this the “big black box”.

The small black box uses patient signs and symptoms and rule-based/heuristic analysis to generate a suggested patient treatment plan.

However, let’s consider what could occur beyond using rules of thumb for diagnosis. Neural networks allow software to learn by identifying patterns from a mass of data. They have been used in the financial world for a long time but how far can they extend into medicine? A recent article in Nature illustrates the potential for these deep learning machines to go beyond heuristics.

The researchers considered melanoma diagnoses. This diagnosis is typically guided by rules described by the mnemonic: ABCD. Where they consider asymmetry, borders, color and diameter of the lesions.

Researchers went beyond rule-based diagnoses by using 14,000 images previously diagnosed by dermatologists. Could an AI system categorize the images as benign lesions, cancerous lesions and non-cancerous growths? The AI system was accurate 72% of the time.

This work was followed up by a test set of 2,000 biopsy proven images. These were fed into the neural network. They compared the computer findings with dermatologists’ conclusions.

This graph shows the performance of the neural network system versus dermatologists. You can see the wide range of assessments by the dermatologists but generally the AI algorithm was superior.

However, I recognize this might be considered a simple, visual evaluation far different then the variegated nature of pain and palliative care.

I would like to introduce an autonomous diagnosis and treatment system that is a futuristic concept but offers potential in resource poor areas. This system would use the small black box AI system with its heuristics and patient inquiries along with non-invasive measurements. In this big black box, the system receives patient signs and symptoms every year and learns about the individual patient. By this process, the black box learns about the peculiarities of the patient and can recommend additional required procedures or treatment plans.

Noninvasive evaluations would obtain data from head to toe, perhaps including brain imaging along the way. What might this look like? Perhaps it is like a space suit or a gelatinous bath. Maybe you would walk around like Darth Vader for an hour, I don’t know.  

However, there is something missing. Namely the patient’s distinctive community and beliefs. Hard data can only go so far. Cultural norms and spiritual needs must be part of the mix. Designers use ethnography to gain this kind of nuanced insight. Ethnography usually relies on observations and interviews to develop a textured understanding of people. This information can also be part of the black box. In this way, the black box can understand the presentation of pain, the importance of dignity, and the elements of faith traditions that might not be otherwise considered in the ‘hard science’ aspect of artificial intelligence.

Ethnographic data is usually obtained by observation and surveys. We are all ethnographers of sorts, we quickly learn to read people and develop insights. For example, this can be summarized by Dr. Nesbitt’s ongoing question for his patients, “what do I need to know about you to so that I might treat you better?”

We all carry our cultural values and past experiences with us. This can make it difficult to see things through someone else’s eyes. For example, consider the arrow hidden in the FedEx logo.

Using AI for patient care does present problems. It can effectively program in prejudice so that the ethnographic data that makes sweeping conclusions such as “a certain population collectively care for the elderly” doesn’t always work. You could well have a case where an elderly person is ostracized for a variety of reasons that ethnographic approaches might not capture.

In addition, data from individuals becomes part of some sort of database that can present a myriad of privacy issues.

Finally, there is the impact of a machine replacing a human in any way. It is an affront to our pride, identity perhaps even dignity.

Therefore we believe that the output of AI, even a comprehensive “big black box” system needs to be moderated by a loving caregiver. Someone who has a relationship with the patient and can deliver automated treatment plans through the affectionate mind of a caregiver.

This is a democratization of medical care where a minimally trained but loving caregivers have the tools to execute a palliative care plan.

Fundamentally we believe that in resource poor areas, the best person for supervising medical care is a person who has a caring relationship with the patient. Technology can act as an adjunct to allow them to do a better job.

People have the distinctive ability to empathize with a patient. We also recognize and appreciate the personal sacrifice given by a caregiver. Additionally, people have the wonderful ability to develop creative approaches that machines will never obtain.

Steps towards Integrative Palliative Care in the Developing World

 by Thomas Ask, John Boll Jr and Alexander Nesbitt

Treatment for suffering in low resource areas can benefit from easy access to medicines that treat pain, gasping, terminal secretions, nausea, anxiety, and delirium. Because suffering needs to be contextualized within prevailing cultural forces, individuals with communal connections with the patients must be empowered to administer these medications and provide care giving services. Additionally, designing and developing low cost medical dispensing systems allows a wider range of treatment. Artificial intelligence can be combined with voice recognition for both patient diagnosis and innovative medical products to improve efficacy of treatment.
See the article at:

http://www.designforall.in/newslettermar2017.pdf