When medicine fails

Great article in The New Yorker - Hospice medical care for dying patients - on what happens when medicine fails to save a life. I think everyone should read it: it's written by a surgeon who deals with a lot of cancer patients and others and it's written for other doctors, patients, those making decisions about any medical issue and most importantly I think, for families of those affected by incurable diseases or simply old age - and let's face it, unless we die in an accident of some sort, we will get there sooner or later.

Recently, I have been getting a more intimate with the health care system in this country through volunteering and shadowing and talking to more physicians. I have been going to outpatient clinics to observe in two different settings: Rheumatology and Oncology. One deals mainly with arthritic pain and as so, with many older people who might actually be near the end of their lives; the other deals with many terminally ill patients, like those described in the article. Neither of the doctors I shadow knows how to deal with the fact that medicine cannot always help the patient.

There is an older lady who comes to Rheum clinics with unexplained pain. After 1000's of dollars of X-rays, MRI's and CT scans, they still don't know why her bones and muscles and joints ache. She takes stronger and stronger pain medications until they stop working. The only things the doctor recommends are physical therapy - which, for a person in constant pain, might not be the best option - and consult with a surgeon. Once, after seeing this particular patient with the doctor, I asked if she ever recommends alternative therapies for pain management, such as acupuncture, to her patients. I have some experience with acupuncture for a sports injury and have also heard from others that it can work for chronic pain as well. She told me that since she doesn't know much about acupuncture, she doesn't recommend it to patients but if they asked her about it, she wouldn't outright discourage them to try. The problem is, alternative medicine is not regulated, not well studied and therefore, it's not clear how and why it works, even though it's a 1000 year old tradition in the East known to be effective. Also, for all these reasons, most insurance companies don't cover the expenses. It's really silly if you think about it: they cover the expensive tests and pain medication, which cost god knows how much and then there is acupuncture, which costs around $75/session (that's how much mine charges). If the insurance company just payed for half of that, it would already be much more affordable and would only cost them $38! That's penny's compared with fees for doctors' visits, which often show up on my bills - $300 payed to the Dermatologist who looked at me once and prescribed a creme. Doctors need to get educated on how to best help their patients once all conventional medications and procedures have failed. They should know about alternatives to at least offer and how best to emotionally help when options seem to be running out.

And here we arrive at the other pressing issue: doctors in this country often think that they are only there to perform a service for which they will get payed some ridiculously high fee. They seem to be forgetting about the fact that they are dealing with human beings who experience pain - physical and emotional - and often are looking for some guidance besides just a prescription or a referral. If this is important in any one specialty, then that is Oncology. On the one hand, doctors who deal with death and dyeing on a daily basis need to develop a distance from their work emotionally in order to stay sane. However, there should be a fine balance between being objective, to the point, straightforward and on the other hand, emotionally supportive and open. The article describes an Oncologist who spent hours upon hours discussing different options for a young man suffering from an inoperable brain tumor. She even went to visit the man's parents to talk to them about their son's therapy and to make sure they fully supported his decision to stop treatment once several of the chemotherapy drugs failed. Where are those doctors?? In my experience, an Oncologist, on average, spends 10 minutes with a patient - a little more if it's a new patient - and then sends in the nurse to explain more about the chemo side effects or refers to a surgeon if that's the route to be taken. While he is extremely knowledgeable and straightforward about the statistics of all the different studies that had been conducted with the different chemo drugs and can tell his patients what chance there is for their cancer to return, but what does a 20 versus a 30% chance mean for a person who just had half her colon excised and has to carry around a bag of poop with her for the rest of her life??

Doctors aren't taught how to deal with the human element of medicine. If they don't already have good people skills - and special skill not many people have to deal with terminally ill patients while balancing professionalism and emotional support - then it's almost hopeless: they will probably just get more and more removed from the human element after years of trying to distance themselves from suffering and death. Doctors are also not taught how to discuss death with patients. As the main focus of the article, it is so important for both doctors and families to have a clear idea of how a person would like to spend their last months/weeks/days. Do you want to fight till the end even if it might shorten your life and worsen its quality? Or would you rather die in peace at home or at a hospice without your body being ripped apart by drugs and procedures? When is there a point after the drugs have failed when a doctor should discuss these things with the patient?

Death is taboo in our society: we don't like to talk about it, hear about it, think about it. Although sooner or later, we will all get there. And while modern medicine has come a long long way, we have to admit that there is still so much we don't know and can't change. Dealing with that needs to be a part of our health care system and doctors need to be trained better to be able to offer something to patients beyond the surgeries and drugs.