A Sample Statement of Patient Rights and Responsibilities

[Includes our commentary in red]

Parents or guardians of a minor patient may exercise these rights on behalf of their child. Parents or guardians also usually give consent for treatment under age 18. Exceptions may be made if a minor is emancipated or if emergency treatment is needed.

Patients and guardians are encouraged to discuss any concerns regarding your medical care and treatment with your physicians or nurses. If you feel your concerns are not adequately addressed, please contact the patient advocacy representative at the hospital.

In summary, you have the right to:

• treatment regardless of race, creed, color, national origin, ancestry, religion, sex, sexual orientation, marital status, age, newborn status, handicap or source of payment;
• emergency treatment regardless of ability to pay;
• foreign language or American Sign Language interpreters if you are non-English speaking or deaf; the hospital should provide adaptive equipment including TDDs;
• complete information on your condition, treatment plan and outlook for recovery; [This is a difficult issue because patients often do not know if they have been accorded this right until it is too late.  The best way to ensure that you are given complete information is to ask questions and ask for second opinions.  Will's godmother succinctly told us, "don't worry about making friends," on the day he was born.  Her intent was not to promote a hostile environment, but to teach us to ask questions until we received a straight answer.  Unfortunately for Will, it took us 18 months to learn this lesson.  Please not that we strongly advocate maintaining as open and warm relationship with your care providers as possible.  We feel very close to a number of Will's physicians, nurses, social workers, rehabilitative workers, etc.  It is a very special time for us and for them when Will visits with his former care providers.]
• the name of the physician or other practitioner with primary responsibility for your care;
• access to your medical records and an opportunity to obtain copies at a reasonable cost or to challenge the accuracy of the records; patients have the right to limit access for research purposes to their medical record; [We strongly recommend that anyone who has a catastrophically ill child should regularly review their child's medical chart.  Doing so will keep you updated on your child's health, the treatment teams course of action, and you may find overt errors in the record (regarding anything from drug allergies to body weight to treatment history).]
• reasonably informed participation in your health care decisions and the right not to be subjected to treatment without consent; information given you should include your condition; intended procedures or treatments; treatment alternatives; treatment risks and side effects; consequences of failure to treat your condition; and probability of success;[Same as above--stay informed, ask questions, and seek a second opinion if you are not sure.]
• refusal of treatment; your physician must inform you of the consequences of refusal. You are responsible for your actions if you refuse treatment or do not follow the practitioner's instructions;
• respectful, courteous treatment;
• care that recognizes your psychosocial, spiritual and cultural needs and the opportunity to exercise cultural or spiritual beliefs that do not harm others or interfere with medical treatment;
• privacy and the assurance that details of your condition and treatment may not be disclosed at any time except to those entitled to receive the information; your medical record will not be shown or released to anyone not  without your written permission, unless under court order or other legal mandate; [This is a significant problem in hospitals--especially regarding patients who have rare conditions or are long term patients in the hospital.  It is by no means limited to student or novice caregivers.]
• refusal of experimental treatment and participation in research;
• knowledge of hospital regulations; [Again, it is in the patient and the family's best interest to familiarize themselves with hospital regulations]
• a copy of your bill showing charges for each service received;
• participation in consideration of ethical issues related to your care; these issues may include resolution of conflicts, withholding or withdrawal of life-sustaining treatment and participation in investigational studies and clinical trials. [This also can be problematic because the individuals charged with resolving such concerns are typically hospital employees.  It is also frightening to make such complaints if your child is continuing to receive care at the facility.  Comments such as "your questions are interferring with your child's treatment," send an unambiguous message to families to avoid rocking the boat.  We can honestly say that our son's health suffered more because of our lack of questions than it did because of our questions.  Having said this, it is important to recognize that there is a time and a place for questions and that the hospital's main priority is caring for your child.]

All patients have the right to make complaints regarding their care to the patient advocacy representative and to have their complaints reviewed promptly and resolved when possible. Patients may also file complaints with state regulatory agencies and licensure boards.  There are separate regulatory boards for medicare patients.

Pediatric patients and parents or guardians

Children in the hospital have the right to:

• Have a parent present as long as it does not jeopardize the patient's care, other patients' care, or the operation of the hospital unit.
• the opportunity for play, recreation and education suited to their age, developmental level and condition, and an environment designed, furnished, staffed and equipped to meet their needs;
• care responsive to the physical, emotional and developmental needs of children and families.  [This is a well-intended idea, but the bottom line is that hospitals are typically not designed to provide stimulating environments (especially for chronically ill children and there families).  This requires ingenuity on the part of family and friends.  A good Child Life worker is also invaluable in such situations.]

Patient responsibilities

Patients and their families also have responsibilities to ensure that patients receive the best possible care.  Specifically, you are responsible for:

• following hospital rules/regulations;
• respecting the rights of, other patients, family visitors and staff;
• providing accurate and complete information about matters pertaining to your health care;
• asking medical or nursing staff for more information if you do not understand your illness or treatment;
• cooperating with caregivers to implement your treatment plan;
• reporting changes in your condition after discharge;
• providing the hospital with accurate health insurance information and/or making other appropriate arrangements for reimbursement of services rendered;
• keeping appointments, or giving proper notice if unable to do so.