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“Let’s Talk About It”…But Not If You Are Really Sick

Let’s talk about it…

Oh, you are seriously ill and this is about your health care? Sorry, don’t have time to talk about it.

That’s becoming my observation more frequently as I help people in need navigate their own health care issues. Whether it has been cancer care or other situations, communication appears to be becoming a lost art. And when you are really sick with a life-threatening illness, that is a problem.

Make no mistake: I do recognize there are a significant number of clinicians and other health care professionals who take their responsibilities seriously and are concerned about the well-being of those they serve. But there are forces at work that not only lead to fewer incentives for physicians and other clinicians to communicate but also add to the distress those professionals face as they try to complete their daily missions.

We also must acknowledge there are increasing gaps between the complexity of our health care and the ability of those who receive that care to truly understand the language, relevance and importance of what is being shared with them—assuming that something in fact is being shared.

Some examples are in order:

An older patient falls at home, sustains a subdural hematoma (a bleed into the brain) along with a laceration of the scalp. They live in a small rural community, and the emergency room physician sews up the laceration and gets a CT scan of the head which shows the bleed. The emergency room doc talks to the family—and is the ONLY physician to communicate with the family over the next 72 hours. Arrangements are made for transfer to mega-hospital about 2 ½ hours away. The patient is transported and admitted for observation to make certain the bleeding doesn’t get worse.

So far, so good.

But then there are these inconvenient facts: the past medical history of the patient is incredibly complex, with lots of illnesses, many medications, and their own limited ability to remember all of the relevant facts regarding their health care and medicines. No long-term medical records are available, and no medication list is sent to mega-hospital. The patient’s children—all health professionals–try to get old records to send to the mega-hospital and also try to talk to one of the physicians caring for the patient. No luck on either count.

The patient does well, fortunately, and is discharged 48 hours later. Never did any physician ever talk to the family (bless the nurses who did). No discharge follow-up discussed with the family, although a visit with the neurosurgeon was suggested at a later date. Turned out that visit—which would have required another 5 hour-plus roundtrip for a 10-minute discussion—was to talk about an incidental unrelated finding. Everyone agreed on a follow-up call about the appointment agreed it wasn’t necessary. Appointment cancelled, and an unnecessary journey was avoided.

Let’s turn our attention to a cancer situation:

Another older patient has a head and neck cancer that appears aggressive. They too live in a small rural agricultural community. The ENT doc does the right thing and refers the patient to another mega-hospital also about 2 hours away. Major surgery is done, follow up radiation is required because of the extent of the tumor. The patient’s mouth scars shut over several weeks and they can’t get adequate nutrition. A consult with a nutritionist is scheduled—for about 6 weeks later, and there apparently was no physical therapy or nutrition advice offered back when it would have made a difference. The patient becomes depressed, nutritionally depleted and ends up in the local community hospital with dehydration and malnutrition.

All the treatments described above require that 2 hour drive each way back and forth for every visit. No one called the patient to talk to them to see how they were doing and they continued to deteriorate. Based on personal conversations, the patient had no meaningful understanding of their illness, the complexity of their treatment, and how to go about getting help for their many treatment-related problems.

It’s appropriate to note that the person in question is older, lives in a rural community and quite honestly doesn’t have anyone to help them understand what is going on. Living a simpler life in a simpler place doesn’t prepare them for the “big-city stuff”. They aren’t prepared to absorb all the information rapidly coming their way.  They are fundamentally lost. What they really need is a life-preserver to help keep themselves afloat during their time of need, and there is no life-preserver available.

But lest we think this is just a problem of age and location, intelligent people in the big city also have issues:

Another person with a serious head and neck tumor—possibly malignant—will require extensive surgery with reconstruction. The patient says they can’t get answers to their questions to help them make a decision regarding two different treatment approaches, one aggressive and probably the more favored, the other less aggressive and threatening but perhaps also less effective. The doctor who recommends the less aggressive approach is comforting and supportive. The doctor who recommends the more radical approach isn’t available.

So, the patient turns to their community, and they grab on to someone who tells them if they embrace a particular lifestyle their tumor will go away. Not good advice in my opinion, but available and believable to the patient.

Turns out they eventually made the decision for the more radical approach. But it took a lot of education to get past the impression that the clinician who was going to do the surgery was not particularly approachable.

I have sat in payment discussions for years and have heard countless claims of how much time physicians spend talking with patients. But something is happening now, where the pressures on clinicians have increased substantially meaning conversations are getting shorter shrift. If you are particularly ill you may see several clinicians, and if you are hospitalized you may not know any of the doctors taking care of you and sometimes may not even know their names. They come, they go, and too frequently they don’t take or have the time to talk and explain the details.

If this scenario doesn’t reflect your personal experience, you are very fortunate. I suspect more of you are experiencing similar moments in your care or the care of your family especially if the illness is serious. And more of the communication is being handled by other professionals, who frequently are empathetic and helpful. However, they may not be the decision makers, and that puts another barrier between you and the clinicians who are providing the care.

Healthcare is undergoing fundamental, structural changes. There are incredible struggles going on as to how we pay and deliver that care, with necessary attention to many issues that complicate the picture even further such as how we provide adequate access to all. Friction is increasing; demands are increasing; time to provide care is shrinking; and all of that comes together in the interactions between patients, families, and care teams. And the pressures on those care teams is causing many of them to either consider leaving or actually leaving patient-focused care. Many of them wish they had the time to chat. After all, they went into the profession to help others, not to ignore them or view them as a burden.

Along the way, conversations have become problematic. They are another demand on the time of professionals who don’t have time to spare. All sorts of approaches are now in the mix, which create further distance between the person who provides the care and the person who receives that care. More emails on the internet aren’t going to make me more comfortable about the care I receive if I can’t talk to someone when I have a serious problem.

I don’t have an answer to the dilemma. And it is not the only dilemma that demands attention. However, imagine how much has been lost when a patient feels isolated and disconnected from the care that may save their lives when they don’t understand their care and feel they can’t get answers they need about their care.

And once again: bless the nurses. Without them, this mess would be much worse than it already is.

2 thoughts on ““Let’s Talk About It”…But Not If You Are Really Sick”

  1. . . . and nurses are being squeezed out – with droves leaving the profession because they are being placed in stressful, no-win situations constantly (the recent case where a nurse was convicted of criminal negligence in the death of a patient – and seemingly, no culpability/responsibility on the part of the large healthcare system/ and its leadership, who made the decisions that resulted in the negative systemic conditions in the first place)! Additionally, although healthcare access and payment for care are mentioned – the increasingly inability of patients to pay for care or even insurance or increasingly having insurance that just denies to pay for their claim (especially expensive cancer care) and either are not treated or they experience financial toxicity/financial distress that bankrupts many – have become negative drivers in the system of healthcare. There are no simple solutions here – but we all, in one way or another will be a patient or have a close family member as a patient – and we have a healthcare system that is becoming more dystopian for patients as time goes on. Is there anything to look forward to with hope – given all the current negative trends/projections?

  2. Assuming one has medical care available in their zip code, it is sad to think of the many patients who are left out in a “medical desert” with only a prescription bottle in their hand and so many questions and concerns in their mind. Also really tough on the family member/carepartner who feels so alone too. Patients need instruction on how to be their own patient advocate with encouragement to call and report symptoms, reactions, nutrition issues, etc. If medical appointments had a built-in follow -up generated either by the doctors office via a nurse or nurse’s aide it could help keep communication flowing. A lot of patients, especially the elderly, don’t want to “bother” anyone or make a fuss and it’s costly to them and their family. Sadly, medical professionals have been overburdened and burnt-out, leaving patients to wander the “desert” with misunderstood advice and misconceptions of care.

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