Relational Medicine: Personalizing Modern Healthcare

The Practice of High-Tech Medicine as a RelationalAct

Federica Raia, Mario Deng

• Publisher: WSPC
• Year: 2014
• ISBN:
  9789814579704
• Topic: Medicine
• Subtopic: Internal Medicine & Diagnosis

In this book, we present a novel framework of high-tech modern medicine. Patients going through major high-tech medical interventions, e.g. Advanced Heart Failure (AdHF) patients undergoing left ventricular assist device (LVAD) implantation and heart transplantation, must integrate scientific and technological advances into personal life, including strong emotional experiences unthinkable thirty years ago, novel to themselves and their caregivers and unknown to healthcare professionals. Our book provides a theoretical framework for the person-centered vision to “heal humankind by improving health, alleviating suffering and delivering acts of kindness, one person at a time”, we develop the theoretical as well as practical concept of the “Relational Act (RA) ” as core concept to engage and participate in modern medicine.

This book will be used as a recommended textbook for the following UCLA Fall 2014 course:
Course Director: Professor Federica Raia / Co-Director: Professor Mario Deng
Course Title: Educational Perspectives of Relational Practices in Modern Medicine
Course Summary: This UCLA course systematically discusses Personhood & Body Concepts in the context of asymmetric Person/Person-relationships in High-Tech Modern Medicine and the diverse implications for building of theories of Relational Practice. Course Topics: Personhood/Body Concepts; Asymmetric Person/Person-relationships; Theories of Relational Practice

Contents:

• Status Quo
• The Roots for Person care
• The Relational Act
• Protecting the Dyad in Practice
• Person alizing Biomedical Research

Readership: Medical students, health professionals and general public.
Key Features:

• Starts at the core challenge of high tech modern medicine: Personhood and body
• Broad concept (from clinical vignettes to theoretical concepts)
• Universal applicability in medicine
• Incorporating western and eastern philosophical foundations
• Broad audience including healthcare professionals and lay public

CHAPTER 1

STATUS QUO

What does it mean to address the status quo? One might think that in this chapter we could build on the rich literature of patient-doctor encounters in general/primary care and refer to the extensive literature documenting concerns with medical practice as patients’ roles in their care change. We do not. We continue our exploration maintaining the focus on high-tech modern medicine. With the virtual absence of attention to high-tech medicine in chronic and acute advanced heart failure practice, often in the setting of critical care medicine, we need to come to a definition of what a status quo in high-tech modern medical practice really means.

Let us start by entering a consultation room during an advanced heart failure medical encounter.

We see three or even four people.

They are sitting.

One, sitting on a consultation bed, naked from the waist up, talks facing another person who is wearing a white coat; a third person dressed in a blue sweater sits next to … Oh wait! The person sitting on the consultation bed has bandages on his abdomen and a tube is coming out of his belly through the bandages. It snakes from the bandages into a bag, to finally connect to a computerized system: “click clack, click clack, click clack”, a mechanical sound is coming from the bag and … oh! … at the same time from the person’s chest. In a hospital outpatient examination room, during ‘VAD clinic’, the medical clinic for patients who have an implanted mechanical circulatory support device, three persons are talking; one, in the white coat, is an advanced heart failure cardiologist, one sitting high on the examination bed connected to a portable machine is a patient with advanced heart failure, “click clack, click clack, click clack”, his mechanical circulatory support device is beating with the rhythm of a human heart; a third person, sitting in one of the two chairs next to the examination table, is a family caregiver. Can you imagine the topic of the conversation?

‘I took a shower!’

Yes, in an advanced heart failure medical encounter, a patient living with an artificial heart, the advanced heart failure doctor and a family caregiver are talking about taking a shower. ‘Not an easy thing to do,’ the family caregiver is saying. ‘We tried different possible ways to keep the water out of the driveline so the electrical motor would not short-circuit and stop. Not good!’ No, not at all having the beloved die like that.

The patient smiles. ‘After much trial and error … I took a shower! A twenty-minute-long shower!’

‘Beautiful!’ says the doctor.

They say their favorite opera is opening the next day. They look at the machine … click clack, click clack, click clack … in the silence of the theater. Will they go?

How to make sense of this scene?

Is it an issue of high technology in interaction with human life and how to design it in order to mesh them more efficiently so that Mr. Rice can take a shower without concerns? Is it an issue regarding a family caregiver scared of harming the loved one when helping him take a shower? Does the caregiver need more training? Or maybe it is an issue of structure of support? Is it a learning and cognitive issue of how to take a shower without dying as a result? Is it the experience of having one’s body kept alive by a machine? Is it a medical issue of the body being able to survive outside an isolated sterilized environment? Is it the experience of the self, having an artificial heart completely substituting for one’s own? Whose experience is this? The patient’s, the doctor’s, the family caregiver’s? Some would say we are asking questions in the dualistic omnipresent problem of essence (i.e., matter, body) vs. existence (i.e., self, mind). This is not necessarily a framework we want to use. So we start by asking why the doctor responds to the simple act of taking a shower by saying, ‘Beautiful!’ What is beautiful here?

Starting from trying to make sense of the response ‘beautiful’ inrelation to the patient and family caregiver experiences of taking a shower, we realize we need to know more about the circumstances, the context, the people involved, their story, how their interactions evolve, how they get to know each other and about each other, so as to share the meaning ‘beautiful’ in describing the taking of a shower, a strange comment for somebody from the outside.

So where to start addressing the status quo?

Wherever we start, there will be always somebody and something to relate to, to know, something before and something afterwards that needs to be part of our story to make sense of the experience, as we ourselves discovered when opening that door on an advanced heart failure medical encounter: in medias res: ‘into the midst of things’.

Nel mezzo del cammin di nostra vita	Midway through the journey of our life, I found
mi ritrovai per una selva oscura,	myself in a dark wood, for I had strayed
ché la diritta via era smarrita.	3 from the straight pathway to this tangled ground.^1

We start in medias res (Nel mezzo del cammin di nostra vita) at a point from where it is impossible to continue on the same path we were on; a turning point (Harrison, 1992).

We proceed in this chapter by presenting the complex human experience of illness, of disease and of the technological advances introduced in the medical practice in advanced heart failure. A practice that the three persons in the examination room are learning to handle, deal and cope with. We proceed, guided by the first Canto of Dante Alighieri’s Divine Comedy. We chose this entrance because we feel that poetry, and Dante’s Canto I in particular as the prelude to Dante’s journey through Hell, Purgatory and Paradise, resonates with the human experience (nostra vita/our life) while recruiting the physicality of our body experiences as constitutive of the person’s life journey. We call upon the Poet to help us recruit illness, disease and high-technology medicine as a human experience, because a person ultimately cannot experience them each in isolation. So, let us follow Dante until our paths diverge, he, going through Hell where there is individuality and isolation, desire and not hope;² we, entering the advanced heart failure medical practice where we find death as part of life, hope, transformation, care.

Nel mezzo del cammin di nostra vita	Midway through the journey of our life, I found
mi ritrovai per una selva oscura,	myself in a dark wood, for I had strayed
ché la diritta via era smarrita.	3 from the straight pathway to this tangled ground.
Ahi quanto a dir qual era è cosa dura	How hard it is to tell of, overlaid
esta selva selvaggia e aspra e forte	with harsh and savage growth, so wild and raw
che nel pensier rinova la paura!	6 the thought of it still makes me feel afraid.
Tant’ è amara che poco è più morte;	Death scarce could be more bitter. But to draw
ma per trattar del ben ch’i’ vi trovai,	the lesson of good that came my way,
dirò de l’altre cose ch’i’ v’ho scorte	9 I will describe the other things I saw.
Io non so ben ridir com’ i’ v’intrai,	Just how I entered there I cannot say,
tant’ era pien di sonno a quel punto	so full of sleep when I began to veer
che la verace via abbandonai.	12 that I did not see that I had gone astray from the one true path.

Dante is lost.

There is no direction to follow in a space that he does not recognize, a place he did not choose to enter. It anguishes him to recall how dire the circumstances were, how confused and terrified he was, so ominous the fear that invades him that death would hardly feel worse. Yet, as he already anticipates (v. 8–9 ma per trattar del ben ch’i’ vi trovai,/dirò de l’altre cose ch’i’ v’ho scorte), Dante will free himself from the condition of bewilderment, developing an awareness and acceptance of his human condition, a condition that is indistinguishably and simultaneously good and bad. It is as mortal as spiritual. It is in the midst of essence and existence, creating a path that is as fallacious as straight. It takes a journey to transform a raw terrifying harsh forest (oscura selvaggia e aspra) into an ancient forest (selva antica) of lush and of luxuriant foliage (spessa e viva).³ From solitude and isolation into a human experience shared with others. It is a journey of becoming.

We are at the onset of a journey of a human being through life. A human being lost, displaced and terrified of finding himself/herself in a life that is hardly recognizable. It is a shared human experience (nostra vita/our lives) as well as this specific person’s experience (mi ritrovai/I found myself). This is the journey that shakes our understanding, our perception, our way of being with ourselves and with others in this world. It emerges from the collapse of an individual’s world as Heidegger⁴ discusses in Being and Time (1927/1962): “it is the possibility of the impossibility of every way of comporting oneself toward anything, of every way of existing” (p. 262/307).⁵ Anything that had importance, meaning, necessity, place, has lost these connotations. It is a journey requiring transformations of the collapsed world unrecognizable to us (selva oscura) into a world that we recognize to be familiar to us (selva antica) because anything to which we relate to has importance, meaning, necessity, place; because in it we make sense of who we are.

This is the journey that those who get very sick unwillingly undertake. This is a journey of oneself as a mortal being, hoping for life in the face of death, illness and disease of the self and of the Other (Charmaz, 1995; Moose, 2005).

Mr. Montale, husband, CEO of an international company, 63 years old at the time of heart transplantation. A year earlier, he had undergone aortic valve replacement, but complications required an emergency surgery within 24 hours to implant a Heartmate I Left Ventricular Assist Device (LVAD) to support his badly deteriorated heart pump function until a donor heart becomes available for heart transplantation. Mr. Montale has been on the heart transplantation waiting list for almost 13 months:

“I was on a business trip and I realized,

I realized I wasn’t walking far.

I was breathing heavily.

I was … sweating.

Few days later,

I could not even keep up with everybody else walking.

I got scared.

When I came back my doctor told me to go for a stress test.

It did not go so well.

The doctor wanted me to go to a hospital immediately.

I thought it would be like,

like my mother. At 80 she had an [aortic] valve surgery and in two days she was out of the hospital and fine.

I?

I did not get out.

I don’t remember much of that time,

about two weeks,

just this:

I was there in the space where they did not know if they were going to save me.

Then I got the LVAD.”

How to understand Mr. Montale’s experiences?

In his longitudinal study of rheumatoid arthritis as chronic illness, Mike Bury, through the narratives of patients’ experience shows that the disruption of structures of everyday life, of family relations and of forms of understanding of one’s own body, are biographical disruptions (Bury, 1982).

These biographical disruptions have been studied by Kathy Charmaz (1995) as they emerge in different chronic illness conditions. She interprets the experiences of those who suffer from various chronic illnesses including heart and circulatory disease, emphysema, diabetes, multiple sclerosis, chronic fatigue syndrome, and rheumatoid arthritis. Charmaz describes living with a chronic disease as developing in stages: one starts experiencing the restrictions imposed by the chronic illness, then one starts making body assessments to identify the trade-offs for revising life goals, commitments and responsibilities in response to the illness constraints and, finally, one surrenders to the sick self, not struggling against the illness but with the illness.

These, as other studies in sociology of medicine on the experiences of chronic illness point out (e.g., Pierret, 2003), show that what a person can or cannot do in living with a chronic illness becomes familiar in a process of re-elaboration of one’s identity.

Let’s say that we are walking to a meeting, as Mr. Montale was. While walking, we do not really pay so much attention to the sidewalk leveling, its curves, small holes...

Table of contents

• Cover Page
• Title Page
• Halftitle Page
• Copyright Page
• Dedication Page
• Forward Page
• Acknowledgment
• Content Page
• Introduction
• 1   Status Quo
• 2   The Roots for Personcare
• 3   The RelationalAct
• 4   Protecting the Dyad in Practice
• 5   Personalizing Biomedical Research
• 6   Conclusion
• Afterword Page
• References
• Index