Advocate for your Hospitalized Loved-One
Acronym P A T I E N T
Redvoice Media interviewed Patient Advocate, Melanie, who provided some great patient advocacy tips using the acronym PATIENT. Here we’ve added some of our own procedural insight here, to help you advocate for your hospitalized loved ones.
P is for print. Each person should print out their state’s codified patient rights and responsibilities, as well as the hospital Patient Bill of Rights and Bylaws. The hospital’s patient rights policy will likely be modeled after the state’s policies, and they can’t argue their way out of their own policy, so having this handy will be helpful. If you’re already in the hospital and haven’t had a chance to do this yet, the policy should be posted somewhere, or you can ask to see a copy. There is a huge difference in knowing this information upfront when they walk into the hospital versus having to play catch up when someone is sick and family is locked out of hospital.
Another “P” term is Presence- Patients have better success when their loved ones are present. If the hospital is refusing to allow visitors, and the patient has a disability, seek out requesting a reasonable accommodation for a support person.
There are several federal disability civil rights laws that apply to hospitals – Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). All of this protects people with disabilities against discrimination by hospitals.
In short, if a patient with a cognitive or mental health disability needs a supporter or communicator to assist with communication and health care treatment and/or to provide emotional support, the hospital must allow it as a reasonable modification of its visitation policy or as an auxiliary aid or service for effective communication. While it varies with each state and hospital, most should have a disabled support person policy, and the keyword to search for in the hospital policy is “SUPPORT PERSON.”
Explain that you requesting a reasonable modification and/or an auxiliary aid or service under the ADA, RA, and ACA. Be prepared to explain why the patient needs an auxiliary aid or service (such an interpreter) or a reasonable modification (such as a supporter or personal care assistant).
The ADA, RA, and ACA are not suspended during the COVID-19 pandemic. In fact, the United States Department of Health and Human Services’ Office for Civil Rights, which oversees implementation of those statutes by hospitals, issued a statement specifically reminding hospitals that they must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of ... disability ... in HHS-funded programs” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic. Check out our sample template to request a support person.
A is for Advanced Directives. It is very important to have your affairs in order before you go to a hospital. There are many types of ADs, but you must establish your Medical Power of Attorney. Who will you designate to make decisions on your behalf if you cannot do so? This can be accomplished on your own by using the forms here.
Each state has their own laws about this, and in Arizona, you need to have the patient sign, a non-family member witnesses sign, and have it notarized. There are many remote notary companies you can hire from your phone!
A healthcare advance directive is a form that allows you to document your healthcare wishes in advance, for a time you cannot make your own healthcare decisions. If you know there are specific things you would like or would refuse while hospitalized, (e.g. Remdesivir and/or a ventilator, mind-altering medications, etc.), list your wishes in your Healthcare Advance Directive, you can find an example here.
T is for typing up a medication list. Melanie said, this piece is big right now, because of the supplement piece. The hospital will not give you any medications brought from home, and they won’t give you anything not on a medication list unless they’re prescribing it. If you show them what you’re already taking, such as, for example, a high level of vitamin D, Melanie says they’re pretty much obligated to give it to you. It will be interesting to learn more about this!
I is for initiating the chain of command. Every type of medical center (hospital, long term care unit, nursing home, etc.) will have some type of chain of command. For example; bedside nurse, charge nurse, patient relations, nurse unit manager, hospital administration or chief nursing officer.
A lot of advocating has to do with attitude and approach. You want to be assertive but not aggressive, persistent but not panicked. Empathize with their situation so they’ll empathize with yours. Compassion goes a long way, and your approach makes a huge difference. Some say it feels like walking on eggshells and sort of like negotiating a hostage situation. If time goes on and you’re not being heard, you can escalate through the chain of command. Its best to do this in writing. If you have the person’s first and last name, as well as any employees’ email address you can put the two together to decipher how to email the care team. The email algorithms are almost always the same for all employees of a particular hospital. For example, Mindy.Smiths@BannerHealth.com works with all hospital employees as long as you have their first and last name.
E is for enroll, and this is a job to do before a loved one is in the hospital. Enrolling in electronic medical records is important beforehand because you can authorize proxy access granting viewing permission and still be HIPPA compliant.
It is important to be able to see in almost real time what the patient is being tested for, what medications they’re being given, how much hydration/nutrition they’ve had, etc. To see the record with your own eyes is important, this is not the same as simply listening to someone read off medications to you over the phone. In addition, with this information, you will be able to send the information to another doctor or get a second opinion easily. Patients have a right to a second opinion!
If the person is not lucid and you don’t have POA, the access to records is difficult to get. And don’t forget you need this for second opinions and the ability for future litigation. If you haven’t accomplished this beforehand, you can still request medical records, but this request MUST be in writing according to many state laws.
N is for notebook. Document everything! The who, what, where, when, and why. Focus should be on who you talked to (last name if they’ll give it, but at least a first name spelled correctly, ask them if you must, and their title and email if possible) and when (date and time), and what you talked about. Was it in person or on the phone?
While documenting is important, if you decide to record your conversations, it’s important to know your state’s laws on this. Arizona is a single party consent state, which is why Ali was able to record the conversations she had with her family’s doctors.
T is for transfer. If things aren’t going the way you want, your loved one can be transferred to a different hospital. Another fantastic place to consider transferring is a Long Term Acute Care Hospital (LTACH). This is different than a Long Term Acute Care facility (LTAC). Many of these LTACH facilities offer high flow oxygen and employ respiratory therapists that specialize in weaning patients off ventilators. These facilities, covered by insurance for the most part, are motivated by different payment incentives than typical hospitals, and can sometimes be more independent which could prove refreshing. To search for this type “LONG TERM ACCUTE CARE HOSPITAL VENTILATOR CARE” or “LONG TERM ACCUTE CARE HOSPITAL BIPAP”
If you want the patient home, they can be transferred onto hospice. Coordinate with a hospice company and they’ll likely facilitate all of the equipment, including oxygen, for delivery to the patient’s home. If the patient chooses to get a second opinion and seek alternative treatment while they are at home, they can always decide to cancel hospice and decide to live. You can take them out Against Medical Advice (AMA). If you’re planning to leave AMA, you don’t need to sign any of the hospital paperwork, it truly only protects the hospital, not the patient. If absolutely needed, you can write your own one- line statement that you are leaving AMA. Most of the time, there seems to be more success for the patient’s advocate/family to figure out all of the exit logistics prior to notifying the hospital. Sadly, we’ve had some hospitals try to block transfer and AMA requests, which is unlawful, but happening. If those cases, this example of a criminal legal notice may help.
An alternate “T” word is to threaten. If it becomes necessary, you can threaten to file complaints against a doctors’ medical license with state boards, or against nurses who fail to advocate for their patients or fulfil their duties required under the state nurse practice act. Medical staff would prefer to avoid complaints as they can be an absolute headache. You can also file a complaint with the state department of health, or the hospital’s accreditation agency (e.g. joint commission). Some have found success in looping in state legislators to make calls to the hospital, and publicizing anything the general public would be interested to know about a local hospital’s treatment of patients. Hospitals love to try to protect their brand, and don’t like negative publicity. If applicable, consider filing a complaint with the compliance officer of the hospital to document the situation at hand. In addition, many hospital administrators and some hospital board members (the ones mandating these protocols!) are bonded, and would hate to have you file a claim against their surety bond. And hospitals most certainly don’t want to deal with civil rights claims of discrimination under ADA protections, or fraud under CMS billing (e.g. keeping someone in an ICU setting for longer than medically necessary). So there you have it, just a few procedural options to have up your sleeve in case you ever need a smidge of additional leverage in advocating for your loved one.
Please visit Hands for Health and Freedom to learn more and while you’re there, be sure to read the Patient Advocacy Protocol.