Tag: patient

Categories
General Public Health

The Doctor as the Advocate

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
– Margaret Mead

Doctors are at the forefront of society. They see the dark pits and abysses of humanity that the rest of us try to forget – those depths of despair that many of us will never experience.

As Medicine continues to change, so too does its definition of illness and what it means to be ‘sick.’ Illness means more than just a set of symptoms or a mark upon an X-Ray; it resides within the choices we make every day, the people we welcome into our lives and the jobs we labor for decades at a time. As medicine continues to encompass more and more of our everyday lives, so it takes on greater responsibility.

Advocacy was defined by Earnest et al. in the January 2010 issue of Academic Medicine as an ‘action by the physician to promote those social, economic, educational and political changes that ameliorate the suffering and threats to human health and well-being that he or she identifies through his or her professional work and expertise’ (3).

An article written in the 2014 edition of the AMA Journal of Ethics further divided the definition into two: agency which refers to working on behalf of a specific patient, and activism which is directed towards changing social conditions that impact our health (6). Although many doctors are comfortable with the direct care of their patients, what can often be forgotten is our social responsibility. Not only do we need to treat patients as individuals, but also as a group – as a community.

The doctor’s role goes beyond the hospital walls. The patient is not just the person sitting in the clinic, but the person next door, the young lady who goes to the shops, the schoolboy who drags his bag over his sullen shoulders every morning. Illness takes place in more than the patient’s body; it takes place in society, in the neighborhood, in the schools that cannot provide support and the families that can no longer cope.; what impacts our health? Is it a parasite within our bodies, a virus that has entered so far into our habitat? Or is it unemployment, poor housing, discrimination, social isolation, loneliness, and abuse? These types of vulnerabilities lead to much higher rates of both morbidity and mortality in those affected (4).

The doctor is the voice of those who do not have one. The status of the medical doctor has been respected throughout the centuries; the curer of ills, the bringer of life. While this is gradually changing in the new era of patient-centered care, it is still a prevalent idea.

The doctor should use this privilege and rank within society to fight for those who cannot. As a group, doctors can hold a lot of power within society. Here in the UK, several Royal Colleges have voiced their opinions in the mainstream media over a number of issues already; in 2015 the Royal College of Psychiatrists spoke out about the long distances many of their patients had to travel for support (8), while in 2013 the Royal College of Physicians highlighted the need to tackle obesity more rigorously (9).

These days it is much easier to be an advocate. All it takes is a few clicks on the laptop and you can enter into the sphere of social media. A quick search on Twitter will highlight numerous debates that are occurring amongst patients and doctors, nurses and pharmacists, families and politicians. The battle is no longer held in the debating arena, but within the public sphere.

There is another side to advocacy. Once one decides to expose themselves to the public sphere, they open the door to a hailstorm of criticism and disapproval. By stepping outside of their niche practice and showing their faces to the world, they invite a whole host of attacks. To counter such negative experiences, many medical organizations have offered advice for healthcare professionals who wish to take a bigger role within society.

For example, the Canadian Medical Protective Association (2) recommends doctors:

  • Approach the issue with transparency, professionalism, and integrity.
  • Work within approved channels of communication.
  • Discuss concerns, suggestions, and recommendations calmly.
  • Provide an informed perspective, and attempt to include the perspectives of patients and other healthcare professionals.
  • Persuade rather than threaten or menace others.
  • Remain open to alternative suggestions or solutions, and try to build on areas of consensus.

Another critique against advocacy is the question of the doctor overstepping her boundary. Is advocacy within the remits of the doctors’ role? There is after all a social contract between medicine and society; it is society that holds up the profession to the highest esteem, expecting them to abolish disease and alleviate suffering. A person does not take off their professional cloak the minute they leave the hospital grounds – rather, its presence can be felt in every setting, whether it be the local shop where they grab their newspaper or the primary school where they pick up their children; it is a type of respect that is rarely be found in other professions (4). Medicine and society are intricately linked, and to claim that the doctor’s job ends once the patient leaves the room is to be blind to the role of healthcare in people’s day-to-day lives.

Yet the role of advocacy is not a role that every doctor may wish to take on. Some doctors may fall into advocacy with burning desire to change the world, while others would prefer the calming atmosphere of the hospital room, with just themselves, their patient and a piece of paper in between. I believe advocacy was described best in 2011 when Dr Huddle, Professor of Medicine at the University of Alabama Birmingham, said that it “must remain an occasional and optional avocation in academic medicine, not a universal and mandatory commitment” (3).

On another level, we must be careful not to politicize medicine too far (5) – medicine is for the public and not just a puppet dancing on the strings of politicians. Medicine must speak for those who cannot, yet still maintain its autonomy. Certainly many of the issues that impact our health are heavily politicalized areas – from housing to employment to funding cuts. Doctors must be careful when speaking for their patients. They must not allow their words to become blinded by their biases. We must remember that the doctor’s duty is first and foremost towards her patients – to the public.

There are plenty of examples of advocacy out there –doctors who blog about the daily struggles of their patients, Twitter discussions about mental health and social care, and the clinicians who write books and articles pursuing public policies with an aim of building a more just, equal and ultimately healthier society.

So, how can you get involved? Grab a book, read a newspaper; join the debates on Twitter, pen an article, start a discussion – go out there and let your voice be heard.

Below are some examples:

The Seven Social Sins:
Wealth without work.
Pleasure without conscience.
Knowledge without character.
Commerce without morality.
Science without humanity.
Worship without sacrifice.
Politics without principle.
– Gandhi, 1925 (7)

References

  1. Oxford Dictionaries. Advocacy [Online]. Available at: http://www.oxforddictionaries.com/definition/english/advocacy[Accessed: 4th January 2016]
  2. The Canadian Medical Protective Association. 2014. The physician voice: When advocacy leads to change [Online]. Available at: https://www.cmpa-acpm.ca/-/the-physician-voice-when-advocacy-leads-to-change[Accessed: 4th January 2016]
  3. Kanter, S.L. 2011. On Physician Advocacy. Academic Medicine. 86:1059-1060
  4. Dharamsi, S., Ho, A., Spadafora, S., Woollard, R. 2011. The Physician as Health Advocate: Translating the Quest for Social Responsibility Into Medical Education and Practice. Academic Medicine. 86:1108-1113
  5. Huddle, T.S. 2011. Perspective: Medical Professionalism and Medical Education Should Not Involve Commitments to Political Advocacy. Academic Medicine. 86:378-383
  6. Freeman, J. 2014. Advocacy by Physicians for Patients and for Social Change. AMA Journal of Ethics. 16:722-725
  7. Easwaran, Eknath(1989). The Compassionate Universe: The Power of the Individual to Heal the Environment. Tomales, CA: Nilgiri Press.
  8. Buchanan, M. 2015. Mental health patients sent ‘hundreds of miles’ for care [Online]. Available at: http://www.bbc.co.uk/news/uk-33535864 [Accessed: 17th January 2016]
  9. BBC News. 2013. NHS obesity action plea by Royal College of Physicians [Online]. Available at: http://www.bbc.co.uk/news/uk-wales-20878210 [Accessed: 17th January 2016]

Featured Image:
Speak up, make your voice heard by Howard Lake

Categories
Opinion Reflection

Dear Doctor

Dear Doctor,

I hear you when you speak of that girl in the hospital ward. The ‘overdose in bed three.’ I hear the harsh judgements sneering through your lips, the sighs and the mutterings of ‘what a waste of life.’ As a student, I am all too privy to such remarks made in the corners of these hospitals. I have fallen upon them again and again.

Please do not be so quick to stereotype. Do you know how it feels to have your mind infiltrated by such intense emotions of self-hatred and loathing? Do you know how lonely it can be to lie curled within the four walls of your bedroom, just you and your mind waged in an eternal battle?

Yes, I realise how cliché that sounds. I know you have just come back from speaking to a young gentleman who has been paralysed. I know you have spent your years dealing with the terminally ill, holding the hands of the dying as you speak to a family overwhelmed with grief.

How can a teenage girl compare? Yes, she may appear to have everything. But aren’t humans’ more than just molecules and proteins? Don’t we all have dreams and desires of our own? What is it that makes us human? Our relationships, our goals, our ability to connect with one another. How would you feel to have these vital components torn away from you? No, it is not the equivalent of the man next door whose wife has just died. But that does not mean that she does not deserve your attention and your respect. You may have lived through the battles of the emergency department, the grievances of the families, the diagnosis’s of tumours to children barely in their teens. But she has not.

Look at her, sitting on the bed, her head bent over her lightly covered shoulders. Look at her, fingers fidgeting with the bed sheets, unsure what to touch or who to speak to. She is scared. She is in a new place. There are bright lights glaring down upon her, strangers rushing past her, eerie machines beeping at her. And inside her mind, the battle is continuing to rage. Look at the scars glistening upon her skin as she cowers in a blanket, trying to hide her wounds from the world. Aren’t those battle scars as well?

Imagine how it feels to have a mass of doctors suddenly gathering around your bed, all looking upon you with pity. Do you realise how exposed it can feel to be probed with such personal questions? The intricacies of your mind held open for a stranger to dissect.

‘Do you have any plans to end your life?
What methods have you thought about?’

She needs a friend. She needs someone to take her hand and ask her how she is feeling. Forget the Fluoxetine, the charts filled with drug doses. It is not a prescription pad that she needs. She needs a human touch.

I know she cannot hear you as you make your curt remarks. I know you will walk towards her filled with smiles and concerning eyes. I have seen that gentle handshake that you have mastered over the years, the slight pitch in your voice as you gently prod your questions. There is no doubt that you have a bedside manner. And within one minute you are gone, the prescription chart left upon her bed for the nurse to dispatch the drugs. The girl still sits there, her posture unchanged, unsure if the conversation had taken place.

I know you are busy. I know you have a team of doctors to command, a list of patients to see, a hospital to run. Yes, I know you have sat through hours of exams, studied well into countless nights to get to where you are standing now. I have respect for the devotion you have put into your career.

But please do not forget that young girl. Please remember to hold your tongue the next time you see a teenage overdose. Yes, to you it is another statistic to keep record of, another prescription to fill out. But to that teen lying in the corner, throwing up the contents of her stomach? She wanted to die just two hours ago. Do you know how that feels? To feel hopelessness so deep, that the future is but one long tunnel, filled with uncertainties and fear. Do you know how it feels to hold a bottle of pills in your hand, staring longingly at the container, at the hope it contains inside?

Yes, she will be fine. She will be discharged within a few hours, another free bed to fill. But please, the next time you come across such despair in someone’s eyes, do just one thing; sit down on the bed beside them, and ask them how they are. Look into their eyes as they speak, and let your whole being be encapsulated by their story. Let them open up to you, with patience and empathy. If someone had done this to them before, do you think they would be in this position now?

Please, the next time you blurt out another cutting remark, a sneer at the cries for attention. Look across the room at your patient sitting there. Look at their posture, their body language, their eyes. Does this look like the sort of person who needs your judgement? Or does this look like someone who needs a listening ear?

 

Featured image:
Writing with Ink by urbanworkbench

Categories
Innovation Lifestyle

Pathographies

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
– Susan Sontag, Illness as a Metaphor

Words are important. They allow us to meet on a common ground, to share experiences and learn from each other. They can evoke every emotion and open new friendships. They can also be therapeutic, and a way to fill the gap between doctor and patient.

Pathographies, defined by the Oxford Dictionary as ‘the study of the life of an individual or the history of a community with regard to the influence of a particular disease or psychological disorder’, have become more popular over the years (1). Walk into any bookstore and you will eventually come across the healthcare corner: a small stack of books by people who have crossed the abyss into the land of ill health. Such stories speak of hope, love, loss, and despair as patients and their families come to terms with the sudden invasion into their lives. Treading through illness can be an isolating experience, filled with pain and uncertainty.

The Database of Individual Patient Experience is a UK-based charity that runs two websites: healthtalk.org and youthhealthtalk.org. It was created by Dr Ann McPherson, a GP who was diagnosed with breast cancer, but found that she had no one to talk to and share her experiences with. As a result, these websites are filled with patient’s experiences of their illnesses, how they coped, and their family’s reactions. Such websites can open a common ground for those who are suffering, those who are newly diagnosed, and the friends and family who may want to learn about how they can help.

“I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy, and tired of acting as though I have something to hide.”
– Kay Redfield Jamison, An Unquiet Mind

How can they help us?

Pathographies are about putting the patient at the heart of healthcare and asking the question: can I truly understand what a person is going through if I have never suffered that ailment myself? By putting experiences into words a bridge is created, allowing those of us who work in healthcare to reach out that bit further. These stories can help us to take a step back from our jargon-filled lives; to not see the routine dialysis, but the precious hours spent with the husband; not the dry numbers of oxygen steadily increasing upon the hospital charts, but the feeling of accomplishment when one is able to take that first breath unaided. Illness is not just a list of problems that need to be crossed off. It is a continuous process filled with dark corners and dead ends.

In an increasingly globalized world, an appreciation of the cultural diversity lying upon our doorsteps is ever more needed. Everyone experiences illness in a different way. The culture we grew up in influences how we look at ailments (3) and the way we handle pain (2). It is through Pathographies that these worlds of illness and health are brought together, creating a narrative that allows us to delve inside the patient’s mind regardless of ethnicity or race. We look beyond the clinical terms, the graphs and the numbers, and not only does this help us to see the patient through a broader lens, it also breaks barriers with the next person we meet. This cultural understanding allows us to look after the ill in the way that they want to be treated – with dignity and compassion. It puts control back in the person’s hands at a time when chaos reigns. Pathographies can help to break the formulaic clinical story. A person is not a machine with a broken part, but an autonomous being with desires and goals, whose need for help cannot always be fit into a category.

All too often we can get caught up in the stereotypes: the smoker with COPD, the teenage overdose, the forty-year-old female with gallstones. We must remember our own biases as we sit in our staffrooms: our own assumptions built from our privileged educations. We no longer live in the world of the authoritative doctor dressed in his white coat. Instead, we let the patient’s words fill the silence.

Instead of opening another lengthy medical textbook, looking up the obscure and the malignant, we can open up a Pathography and step into our patients’ lives. No matter what our role, whether it’s inside healthcare or not, the voice of illness speaks in everyone’s ear and it deserves to be heard.

Further Reading

Illness as a Metaphor, AIDS as a Metaphor by Susan Sontag
An Unquiet Mind by Kay Redfield Jamison
C: Because Cowards Get Cancer by John Diamond
Intoxicated by My Illness by Anatole Broyard

References
1. American Association for Marriage and Family Therapy. 2014. Chronic Illness [Online]. Available at: https://www.aamft.org/iMIS15/AAMFT/Content/consumer_updates/chronic_illness.aspx [Accessed: 28th October 2014]
2. Briggs, E. 2008. Cultural perspectives on pain management. Journal of Perioperative Practice. 18:468-471
3. Wedel, J. 2009. Bridging the Gap between Western and Indigenous Medicine in Eastern Nicaragua. Anthropological Notebooks. 15:49-64

Featured image:
 Speak no evil, hear no evil… by Personal Kaleidoscope