Patients' families want doctors to talk more

Doctors don't talk enough, and that has to change.

That's the conclusion of a recent study by researchers at the University of San Francisco Medical Center, which found that even when there is little to say or the information is uncertain, the families of critically ill patients want to know as much as they can.

Douglas White, and assistant professor at UCSF's Program in Medical Ethics and lead author of the study, said the families understand that doctors will not always have all the answers.

"Our interviews revealed that caregivers appear to believe that some uncertainty is unavoidable, and just the nature of life. ... The vast majority of families of critically ill patients want physicians to openly discuss the prognosis, even when physicians can't be certain that their estimates are correct."

Previous studies have found that doctors are reluctant to discuss cases with families, particularly when the prognosis is uncertain.

The new stdy, published in the January issue of the American Journal of Respiratory and Critical Care Medicine, is based on face-to-face interviews with 179 family members of patients in four different Intensive Care Units.

Eighty-seven per cent said they would want to be told of all prognostic estimates, even if they were tentative, and most said they appreciated doctors showing candor in discussing uncertain outcomes, White said. More information will help families decide on care, and prepare for whatever happens.

 "We learned that family members wanted prognostic information in order to know whether they needed to begin to prepare for the chance that their loved one might die, and so begin the bereavement process. ...I think one of the strongest messages that comes from this study is that family members want to have this discussion with the physician, and want to have the opportunity to take care of unfinished personal and familial business before their loved one dies. They need that chance to say their goodbyes, in case the patient does die."

Doctors, he said, need to learn the skills involved in dealing with families of critically ill patients.

 

Comments

[Clara Chan]

I absolutely agree that doctors should tell patients more about the situation but not giving medicine only. Even if the patient is only having a cold, he/she should be cleared about his/her situation. However, many doctors take the explaination of the patients' situation lightly, which makes patients confused.

[deana]

Stuart, where do you find these things...? :) This one to date wins the prize in "bandage language."

C'mon, Douglas White, if a patient is critically ill, that's all one needs to know. Good god, there's not much to lose here, it's pretty much rock bottom. If there's a recovery, this will be totally unexpected...!

Was the motivation for this study that people were angry when their relatives recovered?

This article/study/announcement is not at all about what it's about. We're just getting more pap over i) the burden of genius among medical mere humans, ii) the pesky demands of laypeople who believe so much in Canada's doctors that they need to be politely told that there ARE limitations to this utter trust.

There is not one shred of value in this article, not one iota of logic as it is presented. It is manipulation through and through.

What's actually going on, is the zamboniing of the way to the next step in medical service. The medical industry wants to entrench as fact that the public will tolerate, even welcome, deception. The way to get this is for doctors to whine, "You demand that I say stuff, so I will... even if it's wrong."

Deception is a great tool in getting people to agree that it's time to donate organs. I notice this area wasn't discussed in the study. That's because when it comes to organ donation, prognostications are being shouted around everywhere. Lots and lots is being said there.

[John]

I totally agree that doctors should talk enough to the families of ill patients so that the family can understand better of what is happening and will happen to their ill relative.

[Gisele Guenard]

Positive Change in Access to Care & patient-caregiver communications.

There is a new Primary Care initiative in Ontario, and patients are reporting they appreciate the time taken with the listening-talking element: Nurse Practitioner clinics. A group of Nurse Practitioners (NPs) in Sudbury is preparing to open a 2nd site as we speak and care for 5,000 orphan patients in total. This is the first NP-Led clinic to open in Canada. The Sudbury region has 30,000 patients without access to Primary Care - whether the care giver is communicative or not. (For those not in the know: in our system, Primary Care is care provided by Nurse Practitioners and Physicians, for the most part. It is the care you need on an ongoing basis to help you stay healthy or get treated for illnesses and injuries. You need Primary care when you are a newborn baby and through all your life stages. You need it when when you are pregnant, well, ill and dying. You need Primary Care when you have a sexually transmitted disease or other infection, mental illness, chronic disease and to learn to prevent complications after a stroke. And so on. Without Primary Care, you are forced to visit walk-in clinics, Emergency Departments or fend for yourself.)
The clinic has a website where you can hear a senior patient talk about exactly this communication issue( see http://sdnpc.ca )2000 patients already now 'belong' to these NPs, who provide their care, along with collaborating physicians when the case is beyond the NP scope of practice. The care NPs provide includes comprehensive assessments, prescribing medications, suturing wounds, ordering lab tests, ultrasounds and xRays, referring you to a specialist or collaborating physician and more. All 5000 patients will also have access to a Social Worker, Registered Nurse, Dietitian and Pharmacist. The need is great for orphan patients, many of whom have not 'had a doctor' for many years. Many currently live in fear of having a major health problem, or complications of their existing chronic illness, as they wander from walk-in clinic to walk-in clinic trying to get prescriptions renewed or xRay results. They often speak of 'being only allowed to talk about 1 problem at a visit'. With the Sudbury NP-led clinic as the model, 25 more Nurse Practitioner clinics are slated to open in Ontario. I have served in health care from nursing to hospital CEO to consulting and everything in between, and know that this NP initiative can literally transform the health care system, especially for any community with a primary care shortage. Yes, patients want their Doctor to talk more, I suppose, if that is their issue. However, access to Primary Care in the first place, whether it is with an NP or MD is a bigger issue. Gisele Guenard, CEO http://www.visionarease.com

[Pam]

My father recently passed abrubtly, with only 5 days ill at 58, and no previous sicknesses. We (the family) had no idea of his odds, prognosis, nor were we consulted with any of his physicians in a practice of ~8 Drs. Not one came in to explain his fatality, critical condition, or odds. Till this day, we have no idea if he was awake, sleeping, in pain, knew what was going on. Furthermore, when returning to say goodbye, we passed a Dr at the nurses desk, who avoided us and did not explain the situation. I am disgusted with Drs and the way they treat the patient and thier families. Absolutely no respect or compassion, rather they think they have "God" like complexes. I would absolutely love to institute a law requiring Dr and patient family information be required and even post the possibility of dealth. if anyone has suggestions or leads please let me know. prbaskin@yahoo.com

[deana]

Pam, this seems strange... You are in the dark with even a match.

Why not even a death diagnosis?

[deana]

When nothing is discussed in the manner that Pam describes, it is usually hospital risk management at work. Risk management means the hospital is protecting itself against liability for something.

My guess is that Pam's father was in the neurology ward and the hospital gambled his family members were YESPs (the demographic which will typically say YES to organ donation if the question is popped at a tasteful time). This demographic sees itself as merciful, and heroic because they are merciful.

But something went wrong and Pam's family said NO. Then the hospital engine had to kick in and no one on staff would say a word. They are trained to zip up when things don't go according to plan. It's a horrible situation, and an icy cold business practice.

Take a look at Shakespeare's "The Merchant of Venice" to see how mercy works. It makes one look and feel good but it is very condescending. Merciful people are also exploited to fix everything up. Their urge to "set an example" is a way to hang them by their own rope. In Shakespeare's play the unmerciful character can push his whims to the limit knowing he will be pulled back at the brink by the snobby mercy class.

This play shows how society works like a home. Children, in a position of not being quite refined push their luck and indulge their whims. The don't intend to cause havoc but they go as far as they can knowing that the parents who see themselves as aware and superior, will restore order.

People should really research the facts of organ transplantation. It's a cruel and unethical scheme to rid society of the brain injured, and make money selling hope to others at the same time. People who are still very much alive are being imprisoned in hospital like Pam's father, until they are irrevocably harmed, and the family can be approached with bad news. Or, the incoming brain-injured are kept sedated so no one can see their degree of consciousness. People who look dead inspire the donation urge in those who respond to flowery advertizements in how to lessen grief through being a hero

I thank Pam for her posting. I hope more people come forward with their experiences. They are pretty much identical, each to the other, because what Pam describes is routine practice.

[deana]

I made a typo in my short post on this topic. I meant to say "without even a match."

[Vickie]

I am from the United States and I am of the opinion that a national healthcare system would truly help to eliminate the freedoms that unethical physicians have in our country.

My experience was an unbelievable string of dishonest doctors who did not take responsibility to inform or assist me with a very dangerous health condition that was caused by a physician.

Until this experience I had no idea just how this system of see no evil hear no evil works in the medical profession. I will admit there is two sides to this coin. Those who sue for an ingrown toenail and cause insurance rates to skyrocket.

On the other hand there are honest people who are truly injured and work towards honesty, integrity and fair resolution and they get slapped, kicked and they might be thrown a crumb for their troubles and their efforts without representation.

If there is one peice of advice I have it would be never trust risk management,document, record and take a witness to every single appointment you ever have with a physician.

The other thing I have to say is what would a doctor do if one of their family members was mamed by another doctor? Guess what? They would have the knowledge, money and connections to sue the pants off of that doctor and they would take him for every dime they could get!!!!