- Hospital Medical Staff and Patients/Parents
- A Spoonful of Sugar (5/97)
- A Patient Bill of Rights (10/97)
- Respect your personal dignity.
- Involve you in decisions regarding your health care.
- Protect your personal privacy and the confidential nature of patient records and communications.
- Inform you of your rights in language you can understand. o Provide complete, correct and current information to you and designated parties regarding your diagnosis, treatment and prognosis to assist you in making treatment decisions. o Explain hospital rules and regulations you are expected to follow.
- Allow you to send and receive letters, make and receive telephone calls.
- Explain the hospital billing.
- Assist you to understand your right to refuse treatment to the extent permitted by law, and to know the medical consequence of your actions.
- Assist you in contacting a member of the Ethics Committee should you have an ethical concern.
- Inform you of any research, experimental or educational projects affecting your treatment.
- Provide access to the information contained in you medical record, within the limits of the law.
- Transfer you to a different room if, for any reason, you are not satisfied.
- Provide a reasonable response to your requests and need for treatment.
- Honor your advance directives within the limits of the law and the hospital’s mission and philosophy.
- Allow you to appoint a surrogate to make health care decisions on your behalf to the extent permitted by law.
- Coordinate your transfer to another facility if the hospital is unable to meet your needs or provide you with a needed service.
- Respect your expression of spiritual beliefs and cultural practices as long as they don’t interfere with your medical care.
- Assist with the development of advance directives if you so desire. Your care is not conditioned on the existence of an advanced directive.
- Cooperate with decisions involving your care.
- Give accurate and complete information about your condition and ask for clarifications when needed.
- Follow the recommended treatment plan.
- Pay our bills.
- Follow hospital rules and regulations.
- Respect the rights of other patients, visitors, employees and to be considerate of the property of others and the hospital.
Newly diagnosed – tend to be intimidated by more knowledgeable medical persons– don’t be. Ask questions until you understand.
Experienced parents/patients – tend to intimidate less knowledgeable medical persons — don’t. Treat them gently; at the very least you need their cooperation to get prescriptions, hospital admissions, treatments, and willing service when needed.
Hospital Medical Staff and Patients/Parents
The mother of a CFer who is also a hospital nurse offers these observations:
I have read many of the postings over the past couple months with great feelings of concern regarding the relationships between medical professionals and patients/families. I wonder if all the negative is truly the result of seemingly uncaring, egotistical, control-freak, tunnel-visioned health care workers or, possibly, these negative situations had an element of over-stressed, over-tired patients/families which unwittingly helped escalate already unpleasant situations. I speak from the point of view have having been there…on both sides.
We, as parents of children with chronic illness, have to fight so many battles…with insurance companies, doctors, nurses, teachers, sometimes even neighbors and relatives. Sometimes I think we get in such a “fight” mode that, when confronted with any difficult situation, we come out with our fists up and ready for a fight. Sometimes I think we forget how to work with people who do not have the experience in dealing with chronic illnesses on the personal level which we have. I know I have certainly made some situations worse because, at the first sign of what I interpret as ludicrous, I’ve become aggressive and even hostile. Usually, when I think back and wonder how things could have been different, I’ve realized my approach to the situation helped set the stage for resistance and lack of understanding….on both sides.
In reading the posts recently, only (one person) seems to have had a few home-care nurses that understood what needed to be done and advocated for the person in need. Is it true, using another’s inference here, we nurses and doctors are a bunch of difficult bastards???
I work in a medical intensive care unit. Maybe I’m lucky…maybe where I work does not represent other ICUs and hospitals. When we see patients in agony, we do what we can to alleviate their distress. Our residents work with us as a team and value our input seeing as how we spend much more time at the bedside than they do. Generally our residents and attendings work readily with us to help alleviate a patient’s pain. When we can’t help a patient, we consult whoever we have to try to alleviate the problem (chemo nurses, psychiatry, etc). I’m not saying ALL nurses and ALL doctors are as sensitive to pain/anxiety issues as others, but a single nurse or resident isn’t the only one who cares for an individual around the clock for the length of an admission. That’s the beauty of a team…where one sees one thing, another sees another. It’s difficult for me to believe that shift after shift of staff are blind and uncaring to a patient’s needs. And if that’s the unfortunate case, why fight with them…move beyond that level, before you’re interpreted as being unreasonable, and find help elsewhere.
Where we DO have difficult situations is when a person is a “full code” requiring everything be done to save and maintain their life and is having pain and anxiety along with actual or potential respiratory problems. There are times, for example when someone has an finger O2 saturation hovering around 89-90 (which means their actual dissolved blood O2 level may actually be around 60-70), is already receiving pain meds and is groggy, and they or their family state the pain is unbearable or they clearly appear to be in pain upon our assessment. That’s when we have to try to find another plan for the patient’s reported or observed distress. If a patient is too groggy to be pressing their own PCA (patient controlled analgesic) pump, then family SHOULD NOT be pressing it for them. Medicating a patient without the knowledge behind what you’re doing is not only dangerous, it’s illegal. There is a chance of respiratory depression with every injection of morphine or other opiate which is what is happening when a PCA pumped is pressed. If a patient is unable to press his/her own pump button, then another plan needs to be instituted.
I have seen some situations where pain simply had to be endured to avoid compromising respiratory status in “full code” status patients. We absolutely try to avoid that situation, but sometimes can’t. In a Do Not Resuscitate (DNR) patient, all measures to avoid respiratory depression are taken but not to exclusion of as near complete pain control as possible. The patient and family usually ask for comfort as the absolute priority in DNR patients. It is up to the patient, nurse, doctor, and family in some cases, to devise a plan. To what extent who each is involved in this decision making depends on their level of knowledge and ability to make informed decisions and the situation at hand. There have been times when I could have been so much more of an advocate for my patient and accomplished so much more (in terms of pain control, anxiety reduction) for them but I am spinning my wheels because I have a family member who is quite literally out-of-control and is getting more of my time then I have time to give…I end up spending more time with family than my patients. I have gotten sucked into whirlpools of family chaos at times and realized, after the fact that, as cold-hearted and awful as it may seem, someone needed to tell the family to stand back a bit and let us do what we need to do to help their loved one. There are nice ways to say this and sometimes ICU nurses aren’t the ones or don’t have the time to skillfully “pull it off”.
Control issues are always complicated and difficult to manage. I try VERY hard to understand where a family is “coming from” in their approach to nursing staff. Being in an acute care setting is not the same experience as living with chronic illness. What the family thinks best, at times even the patient thinks is best, may not be in a critical care setting. Crisis is quite different from chronic problems. And there certainly are times the patient and family do know what works best to alleviate a problem. Both staff and families need to understand this and try to learn to listen to each other and not battle over control issues while attitudes and egos becomes bigger and uglier and patients generally get left-out on the sidelines without their needs being met. ***Please understand, we in health care are facing insurmountable odds in time management due to the never-ending financial cutbacks…there is very limited time to do patient care, evaluating effectiveness of plans and team planning for alternatives, meeting immense family needs and then documentation of it all. And documentation is ever-so-important with all the talk of “SUE ‘EM” when things don’t go as expected.
MY point here…an ICU nurse, any nurse, may not readily recognize the importance of a family member’s input who has been so very involved in a patient’s care (this is generally not the way it is in “well until now” families) and all nurses may not be the most diplomatic in dealing psychologically with a stressed, tired, angry family member. As a parent of a cf child who’s “lashed out” at hospital staff in a major way, I can say, maybe we need to learn the art of diplomacy in our approach to what we’d like to accomplish. We may find out the medical staff are not our enemies. Once a family has been “pegged” difficult to work with, the stage has usually been set unless you’re lucky enough to have someone assigned who recognizes the situation and breaks the cycle.
I know that CYSTIC-L is a place to vent and I recognize the importance of this, but I hate to see the lack of understanding all sides perpetuated. I am so disturbed that (most often) over-worked staff is perceived as the enemy and few look beyond to where the problem stems from. Conscientious, quality nurses are leaving hospital nursing (often ANY nursing) to do ANYTHING else because they simply can’t take the pressure of being caught up in this terrible cycle of no support from administrators, poor working conditions, cuts in pay and angry, hostile family and patients.
Being in the hospital is a nightmare in itself. Having a full-scale war makes it worse. My very unsophisticated viewpoint of war…. despite what the issues are, where it began or who started the war, soldiers are left dead and wounded on both sides…and to me that’s not an answer.
A Spoonful of Sugar (5/97)
Having lots of junk food around to share with nurses and staff is a great way to keep them “checking in” on you more often. I always bring 3 or 4 bags of Hershey’s Kisses or Hugs (Where I go now they prefer the Hugs w/almonds) and make sure they know that they are for them not just for you. I think it does help some. Plus having access to chocolate gives you that “loving feeling” all the time.
A Patient Bill of Rights (10/97)
A member of CYSTIC-L says: Found this at a local hospital. This form is given to every patient who comes into STP. Gary’s Mercy Hospital in Enid, OK. Maybe if your hospital does not have something similar, this may be something you can show your hospital next time you have a reason to visit.
Statement of Patient’s Rights and Responsibilities
You can expect the hospital staff to:
The hospital staff will expect you to: