What happens when a patient doesn’t fit the healthcare infrastructure?  Sunlight filtered in through my bedroom window and for just a few moments felt a residual sense of peace and tranquility that only comes with sleep. In that state between sleeping and waking I had an epiphany that each of us comes into this world with an inner wisdom, and that healing is as much about honoring the individual and their own process as it is fixing broken parts.

Message to Doctors

I have a saying that one cannot ride two horses at one time. You cannot claim to be a healer while you harbor ill will towards that same patient in your heart. The latter invariably poisons the former, and in that environment there can be no healing. It’s a barren and desolate place full of contradictions. It’s about can’t rather than can do, about no rather than yes, it is a restrictive landscape rather than expansive, and in such a place creativity cannot survive. There is nothing more soul-sucking than that which accepts lack as the status quo.

One must be guided by the highest common denominator, not the lowest, and must be willing to reach beyond the walls of the box where they reside and embrace all that exists to be discovered outside ones own experience.

The best healers are ones who can put aside the ego for the greater good and truly put their patients’ needs first, step into their shoes, and see the world from another perspective, always understanding that at the end of the day it is the patient who lives in their own body, knows how it feels, what it likes and doesn’t, and ultimately what it needs.

To be a true healer one has to be a good listener. There are clues there if you’re willing to look.

Give the patient nothing to fight and the journey will go smoothly. There is a time for fighting and that time is when you and your patient run into brick walls in obtaining necessary services, when you need things completed stat, and when nothing seems to be working, when your patient has neither the energy nor the will to fight alone anymore. Save it for those who seek to stymie the patients’ best efforts toward a better life, for the procedural road-blocks that invariably crop up, for the budget cuts in their health insurance that tell them they cannot have a life-saving operation, a medication that keeps them out of suffering, or a piece of medical equipment that makes the difference between being completely helpless and able to do more with ease.

You may think that the above are losing battles and find it easier to tell your patient to accept that he or she can’t have that medication that keeps them out of pain or fights their cancer, or that they must live with the constant fatigue that makes life nearly intolerable, but to fight your patient’s process is the biggest losing battle of all. The biggest mistake is to have to be “right” because in so doing you lose sight of why you’re there in the first place.

You must ask yourself would you rather by “right” or do you want what you do to work?

Always remember that your role is not to dictate nor to gate-keep, but to facilitate whatever it is that the patient sitting in front of you needs, and to put their priorities before your own, to learn and value what is important to your patient, the goal being to achieve the outcome that they want.

Too many these days live by the philosophy

“If the shoe doesn’t fit then break the foot and cram it in there anyway.”

This is the wrong approach and here is why.

1) It causes trauma

2) It creates an adversarial relationship that precludes creative brainstorming and solutions

3) and it simply does not work. Your patient is an individual and must be treated as such if you want  healing to happen. One can never presume to know what’s going on within another. Forcing your will upon another person may obtain short-term compliance, but compliance and effectiveness are two distinctly different things, and merely insisting that your patient fit into a cookie cutter frame causes discord between you and your patient and within him/herself.

Nobody is a better expert on the patient than the patient and the best outcomes for quality of life happen because you mutually approached a problem and fit the solution to the patient.

A Patient is Not A Diagnosis

Too often doctors and other healthcare professionals focus too much on diagnosis and leave the patient behind in the process.

Sometimes diagnoses can be identified right away, and other times that process may take years. When it does you must ask yourself “What can I do to help my patient in the meantime?” rather than thinking in terms of all the things you cannot do because you don’t yet have a diagnosis. Life goes on for that patient between consultation and diagnosis and your mission is to make living as comfortable for your patient as possible.

Now is not the time to quibble about how many clinical trials a given treatment has, nor to split hairs about whether a particular treatment is warranted. The vast majority of patients are realistic about what helps and what doesn’t and today’s patient may have read more of the literature than you have and be well-versed in what treatment options are available.

Ask them what has worked in the past and what hasn’t. If the patient brings in a list of goals or priorities for testing and/or treatment this should be respected. Identify what things you can personally do and for those you can’t, try to locate other professionals and/or services who can meet those needs. Sometimes the best thing you can do is be a strong advocate for your patient. If you convey that you believe in them and that you support them other providers will too and chances are you will obtain the desired result.

If you are unsure about certain options, don’t just dismiss them out of hand. Give your patient a full explanation for why you take the position you take, but be prepared to listen to the patient and to keep an open mind. Remember that being effective is much more valuable than being “right”.

while you may get the occasional outlandish request, most will be within reason.

Never discount or devalue a patients’ symptoms. This is important information and should be treated as such. Understand that this is an asset, not a sign that your patient is a hypochondriac. It is better to know all the symptoms they’re having and to discover that everything’s OK than to miss a life-threatening situation because you didn’t take the patient seriously, and worse, failed to act when you should have.

If you find you spend more time and energy trying to get out of doing for your patient than you are advocating for them you need to ask yourself why.

The following is an example of an instance in which a doctor is trying to look for all the reasons why not rather than using that time to try to find a way to make a given treatment accessible.

Sent: 03/05/2016 9:54 AM

Message from my GP;

“If Piedmont felt that you needed IV fluids they would have given you a PICC line before you left and would have ordered the fluids. Actually, if they felt that you needed IV fluids they would not have sent you home at all. Even if I tried to order IV fluids for you it would be denied by your insurer. If you get into another situation that you feel you require IV fluids, please go back to the hospital. PB”

Clearly this is untenable. I can’t live in the hospital and this problem is not going to just go away so the only reasonable solution is to treat it at home.

Notice in his note he did not offer to do anything or offer any alternative.

If Piedmont had given me a PICC line what would he have done? Most likely he’d have told me exactly the same thing. He would have then said he couldn’t use the PICC line, and go back to the hospital so that they can handle it. Shifting responsibility never solves anything, and when everybody is pointing towards somebody else, that leaves the patient with no help, only to become sicker, and eventually the hospital becomes a self-fulfilling prophecy. There were a few days at Piedmont that I was in really serious shape because my blood pressure was so low I was sinking into a stuporous state. Nurses kept trying to rouse me and all I wanted was to “rest” even though I knew what that meant in the larger picture. I have only been in that state one other time (and that time 12 years ago my blood pressure was dropping really low too). They did an ultrasound to see if I had urinary retention because I had laid there motionless for many hours and apparently I did but had no awareness of it because a sort of euphoria sets in.

My Response;

“Yes, you’re right, Piedmont should have written the IV Saline order for once I went home, and they discharged me too early. That’s where they messed up on that end. The doctor working that day acknowledged that he knew I wasn’t technically well enough to go home (but apparently didn’t document that for obvious reasons), and told me he was going to write the order and that a nurse from Gentiva would be out on Sunday to get started. (I was discharged on a Saturday but unknown to me the doctor failed to write the order by the time I was leaving. By that time it was too late to cancel the discharge and my transportation was on its way to pick me up). It was all rushed past me and I had nobody advocating to see to it things were done right. I just did the best I could on my own. It was hard enough to get the forms filled out to have my records sent to Emory before I left.

A doctor had spoken with me midway through the hospitalization and told me that this is chronic and so he thought it best to have me on the IV Saline continuously since things began destabilizing again when he tried discontinuing to see what would happen. He realized that I would need to be followed for this and I guess he assumed Emory was capable of continuing it on an outpatient basis once I did leave the hospital just as people with other chronic conditions are treated even outside the hospital.

The reason they discharged me when they did despite my condition was that they felt I needed to see a movement disorder specialist and administration was on the attending’s back because this is supportive care and all they could really do at their facility (not that it’s not helpful, not needed, nor unwarranted).

They felt I needed to get to some place like Mayo (not realizing there was a 1 year wait) in case there might be more that could be done to treat my underlying neuro condition in addition (since the Dysautonomia is probably secondary to another neurological condition) and they weren’t a major medical center with those kinds of experts. They probably assumed that keeping me there would hold up that process. Their attending physicians changed almost daily, so it wasn’t all that organized from one shift to another.

Emory is capable of putting in a central line if necessary to carry this out. If there is any other mode of IV access that home health would be willing to use I’m OK with that. The nurses specified a central line since they couldn’t come out everyday and they told me that a port was the least risky for infection. It seems to me if they came out 3 times a week they’d be checking it often enough to prevent complications whether it’s in the arm or other type device, and if it turns out I need it for other things later on it will save having to do it later. Gentiva is also supposed to have a nurse on call after hours in case of emergency.

I’m working on getting longer-term services through Medicaid that also provide nursing. That’s the service that will take 6 weeks to obtain and through which I’d also obtain the personal assistant. That agency might be able to authorize nurses coming out more times a week.

As for whether insurance will cover the treatment; that’s the kind of thing a GP is supposed to help advocate for on behalf of the patient and if all else fails see whether there are other resources available to cover it with. We already know it helps improve autonomic processes from how it helped at Piedmont. One of my doctors needs to do this.

I just seem to be in the unlucky population of patients who have orphan diseases that are challenging to treat. It’s not like I had a choice. It’s just how my body was made. If it’s frustrating for doctors it’s 10-fold frustrating for me because it’s my body that goes through it. It doesn’t always wrap up in a neat little package, I wish it were that simple, but that doesn’t mean you stop treating, doubt the patient’s credibility, and stop doing anything you can, or that you take that frustration out on the patient.

Having to prove everything 20 times over beyond a shadow of a doubt and being made into a political football does not inspire me to trust nor does it make me feel supported while I’m facing significant health problems. What I need right now is gentleness, kindness, and real empathy and understanding.

Piedmont could have done some things better but I’m here now and it is especially crucial that my regular treating doctors work with me and not against me. I have enough hurdles as it is given the complexity of the disease itself.

I don’t know what the future will bring in terms of my prognosis and things may get worse. All the more reason to line up somebody amenable we can work with in case I should need hospitalization again in the future. Losing control of my body processes is unsettling enough without also having to worry whether my doctors can handle it emotionally and whether they can and will do what needs to be done for me in an expeditious manner.”