By Lisa Wolfe
Editor’s note: Lisa Wolfe is a woman of many journeys. She has lived and worked in Michigan, New Mexico, Southern Texas, and Alaska with First Nation and Hispanic families in maternal-child health as a midwife and educator. For nearly 50 years, she worked as a patient advocate alongside her work as an RN. Her maternal grandparents, immigrants from Denmark, worked in health care through nursing and massage therapy. They, in turn, came from a long and rich lineage of medical, nursing, and massage practitioners. She learned about culture, the role of family, and the importance of a holistic approach to living and health care, beginning with them. She has used the qualities of patient advocacy in the education and care of nursing students, medical students, and residents when she was employed in the medical and nursing health care and education systems. She believes that patient advocacy is a key to satisfactory health care—for patients as well as for the providers and health care workers. She currently lives in Lake Ann.
An 85-year-old man was discharged from the emergency room observation area at 2:15 a.m. He had no indication that this was going to take place as his health issue was not resolved. He had no cell phone, couldn’t walk without his walker, and no one to pick him up from the hospital, yet he was wheeled out to sit at the hospital entrance and wait for a county transport to pick him up at 6:00 a.m.
Another patient refused surgery because he was afraid of the invasiveness with a kidney diagnosis received just minutes before. The surgeon got upset with the patient in front of the health care team. The patient was alone and needed to discuss things with his family. Once that conversation happened, the patient asked the nurse to talk with the surgeon about his decision. The surgeon informed the nurse that he was no longer available to perform the surgery.
Health care can bring about personal aspects of fear for both the patient and the provider. The provider is taught the role of authority; the patient is often taught to be obedient. This can lead to over-entitlement and disempowerment within the health care relationship. By communicating your needs, you are teaching your health care team to respect the system and yourself. You are the expert in your experience and body. Your provider is an expert in science of the body.
The fundamental principles of “safety, security, and trust” is the foundation of good health care. As a patient, we want our providers to give us their time and attention—to treat us as they would like to be treated. A satisfying relationship produces growth and trust. Ask your provider to help you understand your care. If you can’t advocate for yourself, make sure you have someone who can speak up and take notes for you.
Personal empowerment can help inform our health care experience. Think about the possibility of the partnership with your health care team in a way that has meaning for you. Patient Advocacy can help us understand our health care system and our involvement in it. As patients, we can help providers understand that we are eager to be informed.
Fundamental to patient advocacy is the model of holistic care which involves a dynamic relationship between our mind, body, and spirit, including cultural norms and values, and justice-oriented principles. Integrated within physical care, we can use practices from our personal life including meditation, visualization, or other healing tools as we prepare for appointments and procedures. Informed communication is the opening from which everything else follows.
An elderly woman needed a nursing home urgently. It took two weeks and a search of 19 different nursing homes in the area with a moderate sized population. She went to a nursing home that had a two-star rating because there was no other choice. At this nursing home there was an inappropriate event at night with an orderly. When the elder’s daughter found out, the event was directly reported to state authorities. All of the staff involved were immediately let go, and a new administrator was assigned to work through some of the problems. The director of nursing remained and was “chilly” to the resident and her daughter in all subsequent situations.
Be a “problem patient” if you must. Know your team and become involved in meetings, even if this is “inconvenient” for the staff. Show up. Be involved. Ask questions. Know unit managers if needed. Establish relationships. Who are the consultants and why are they involved? Get to know your floor managers. Ask to meet them. This is your ticket to involvement.
Get a second opinion if you need to. Change providers if you have different values than your current one. Know who is in your room and why. Help your providers know what your priorities are. Speak up. Communicate when you have a personal issue such as being afraid of anesthesia or wanting a certain person to review your consent form with you.
Providers are trained in the science of physiology, chemical applications of medications, and the physical body. They are rarely, if ever, taught about relationships and emotional situations. Medications, diagnostic studies, and regulations control most of the care that is given in hospitals whose specialty is to serve people in acute conditions.
The provider’s environment is stressful. They are often overworked and are responsible for all aspects of patient care. Nurses, social workers, physical therapists, nutritionists, chaplains, home care consultants, pharmacy and pain control consultants, medical assistants, receptionists, and behavioral health providers are all contending with their own mandates and stressors.
Your room influences many aspects of your treatment, health, and well-being.
It’s your only private place. Sometimes your provider has a person taking notes or helps them with tools for a procedure. This person serves as a witness for the provider. Know the name and role of this person. Your hospital room might have monitors and other equipment with an array of sounds There are many types of potential disruptions: lights on at night, hallway noise, the use of the bathroom, periodic treatments and use of devices, the location of your belongings and whether or not they are labeled, people you don’t know in your room, and daily routines (are you the last person for a shower, medication or meal pass?). Do you need to negotiate the television with a roommate? What about phone and computer use and your rest needs? Consider if you need an eye mask, ear plugs, or headphones. Do you need time outside in nature? All these things can influence your care, comfort, and healing.
Be informed. Know about the cost of your care. You may have to research this with the billing office and insurance company. Consider the extent of your government entitlements and insurance coverage including providers who are “out of contract,” and additional charges such as physicians who read diagnostic studies, labs, screenings, and consultants.
A woman told her doctor that she did not want to take a certain medication because she had an allergy to it. The doctor gave it to her anyway and she had a cardiac arrest. This adverse reaction was not documented in the patient’s record. Her family met with the patient advocate of the hospital who was sincere but didn’t follow up with a phone call or letter. Both were promised.
Get a copy of your hospital or facility Code of Conduct and the State Ombudsman’s (a public official appointed by the state legislature to receive and investigate complaints against the administrative acts of government agencies) name and contact information. You have a right to your medical record with a choice between a hard copy or online version.
Know your rights. Look over The Patient Self-Determination Act (PSDA) and the right of self-determination, as guaranteed by the Fourteenth Amendment of the U.S. Constitution and the patient rights documents of your hospital, nursing home, or other health care system.
Double check consents and other paperwork. Is your procedure on the correct body part? Is the biopsy in the proper area? Make sure you understand all of the information on your consent forms fully before signing them. This is your only protection if there is a mishap.
Talk to your family. Ask how they feel about the decisions that are being made. Take some time before signing anything. Be sure you know what is being done and why.
Medications are a pivotal treatment consideration for the hospital and insurance companies. Know your medications—what you are taking and why. You can refuse medications, unless it’s a life and death situation and you don’t have your end-of-life paperwork in order. Bring your allergy list including your reactions with you to your provider appointments to help your provider determine with you the best choice of medications.
Work with your discharge planning people for setting up follow up appointments, including home care, before leaving the hospital or facility. What are your transportation and home care needs? Be sure you have an understanding of the timing of discharge and your preparation essentials. Make sure you have an advocate “on call” to help you if discharge comes up suddenly.
If it is important to you, consider asking surgical team about music, prayer, who is doing the actual surgery, and other aspects of care in the surgical suite while you are under anesthesia.
Think about your privacy needs such as special visits of chaplain or family. Ask for a “Do Not Disturb” sign on your door during meditation or other quiet times.
Think about your hygiene, including your nails and hair. Your independence is a valuable aspect of your healing even if your staff are busy. Communicate a plan with them. How is your equipment working for you, including for showering and transferring. How is the ease of use of appliances and tools for eating, hearing, and seeing? Consider senses of smell and sensation-related support you need.
An elderly woman was discharged before she had her diagnostic study results, and inpatient referrals were still pending. She had no discharge planning done even though she lived alone, without transportation or assistance with her treatments which had not been explained to her. The hospital told her she was to be discharged because they needed the bed to be open for a future admission.
We are the leader of our team. Our provider relationship can flourish when we assume good intent and a shared investment, learning from each other. With the courage to speak up and take responsibility for our own health care, we can shift from disempowerment to empowerment, from partial involvement to satisfaction. It can be rewarding. Take the time. Have an advocate. Be an advocate.
Lisa Wolfe, RN, MSN, CNM; Dipl PSH, Dipl IC is a Certified Nurse Midwife and Registered Nurse with focus on cultural and psychiatric health, holism, and education. She is a Pure Spiritual Healer, Intuitive Counselor and Coach, and Animal Healer. She is also a Sevalight Associate. For more information about her practice and classes visit LisaWolfeHolisticCare.com.
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The fundamental principles of “safety, security, and trust” is the foundation of good health care. As a patient, we want our providers to give us their time and attention—to treat us as they would like to be treated. A satisfying relationship produces growth and trust.