Patient advocacy

Should patients be provided with advocates in the health system?

If yes, under what circumstances?

HSHM305 Law, Ethics, Advocacy and Healthcare

Introduction

            Patient advocacy is a sensitive issue because of the various dynamics that revolve around it. There are emotional, psychological, medical and interpersonal reasons to have or not have patient advocacy as part of health care systems. The multitude of issues facing the US health care system includes financing, literacy, chronic diseases, safety, staff and technology. There is need for patient advocacy in the health care system through the involvement of a patient, his/her family, health care administrators, medical professionals, government authorities, third-party players, planners and policy makers in  the processes (Johnson et al., 2008, p. v). Anyone can “advocate” for someone who is a patient.  Physicians, nurses, social workers, attorneys, and even friends and relatives of the patient may feel a need to help a patient obtain the care they deserve.  Service as a professional patient advocate is a separate calling that has its own boundaries and parameters.  I want to start by looking at what a patient advocate is and is not.

            There are various circumstances in which advocacy becomes an essential ingredient to the welfare of patients. Some experts contend that during the much needed transformation of the health care system, advocacy should be implemented as a collaborative solution (Johnson et al., 2008, p. v). Advocacy may also be formal or informal depending on the structures which are set up for intervening on behalf of a patient. Structures that are set up by governments or non-governmental organizations may be categorized into formal and informal structures. The watchful eye of relatives and friends who inquire research and clarify on matters pertaining to the welfare of a patient may be categorized as informal or unofficial. Patient advocacy may be necessary at these two levels depending on the exact circumstances which are prevailing. The role of patient advocates may be compared that of healthcare insurance providers. The certainty of healthcare complications does not exist, but when it does emerge it plays the role of a crucial financial solution. A patient may not know that they need intervention in the form of a healthcare advocate until they are in a situation where they are too vulnerable to speak for themselves Patients can be advocated on personal, professional or mandatory level depending on the actual prevailing situation. The discussions in this essay shall be with this major consideration in mind.

History and Background of Patient and Health Care Advocacy

            Health care advocates started to exist because of changes in the health care system itself. Technological advancement in health care triggered the rise of real concerns and fears among patients about their ability to access high quality care (Clarke et al., 2015, p. 2). The climate for changing the health care system in the USA was healthy after the civil rights movements of the 1960s. This is because the social issues that were being addressed were sensitive and there was a wave change. The movement for patient rights in the 1970s brought significant attention to the concept of patient advocacy in the United States of America. It is widely known that health care advocacy was pioneered from Mount Sinai Hospital in New York. The role of patient advocacy was lobbied for from different quarters throughout the 1970s. The professionalization of patient advocacy took place in the 1980s. The Association of Patient Service Representatives grew throughout the 1980s and flourished as it continued to specialize in patient advocacy. The nature of the role of an advocate has grown to be adapted by different health care professionals. It may be hypothesized that this role will become a profession of its own over time.

Circumstances in which patients should be provided with advocates in the health care system

Patient advocates may be provided to advocate for patient and family-centered health care. There are situations in which a health care institution may use patient advocacy as a means of marketing their services. An approach for health care that is centered on the patient and their family forms an effective ground for establishing mutually beneficial partnerships between the patient, family and health care providers (Johnson et al., 2008, p. vi). Allowing families to function as health care advocates is an acknowledgement of the role of this social unit in the improvement of the well-being of patients. This shows that families are crucial allies in matters of quality and safety within the healthcare system. It is difficult to be negligent over a patient when their family members are present and actively making inquiries about every next action which affects their loved one. The rationale behind the allowance of families to participate as patient advocates is somewhat obvious. Many who defend the need for patient advocacy with the exceptional role of families contend that the very young, the very old, the chronically ill, the mentally ill need to informed intervention at all times and so do the ignorant and the uninformed.

Secondly, patient advocates may be provided where there is the possibility that quality of health care may be compromised. Patient advocacy plays an important role in enhancing the quality of health care services (Earp, French & Gilkey, 2008). Patient advocacy is perceived as a powerful pressure source for initiating and following through on necessary changes in healthcare systems. Earp, French and Gilkey draw from professional and personal experiences in order to justify their thesis statement that there is great need for healthcare advocates in the system. Many people have died in hospitals because of poor quality control. Many have been left mimed or lame. Patient advocates empower both patients and their families to be stakeholders in their own well being. This is done by facilitating for communication between a patient’s healthcare professionals. In addition, patients utilize resources that are useful for well-informed decision making processes. The use of information in healthcare advocacy cannot be ignored. The personal touch that existed between the family doctor and his patients has been eliminated by the dynamics of technology, costs of healthcare, need for specialists and many complexities of the modern healthcare systems. This personal touch can be reignited by increasing prominence of the role of patient advocates. From this perspective, the most prominent role of the patient advocate is to facilitate for accountability. This accountability affects the financial, physical and personal welfare of the patient at all stages. A patient may be too weak to go through the invoice which they receive after several days of in-patient services. The accountants of a hospital, if unchecked, may be tempted to exaggerate costs in order to make a quick dollar. The patient advocate would take time to go through the services and medication which a patient actually used and prevent them from financial vulnerability.

Thirdly, patient advocates may be provided where there is need for change in the manner of health care services delivery. Patient advocates can provide much needed intervention when there is a possibility that health care services are provided with compromise. There are situations in which health care providers must be pushed to change the methods by which they provide health care. In such a situation, the patients’ advocates mediate and ensure that patients receive care when they need it. Advocates also ensure that there is a smooth flow of information between the patients and their care givers, and that all information which is necessary to the patients well being is made available to them. The patient advocate will also be useful if they can regularly identify ways of improving the quality of care made available by talking to the patients about their experience. A second useful patient advocacy intervention is necessary when the employers or insurance company of a patient is delaying or denying the rightful payment of a patient’s medical bills. In such a situation, the patient advocate will engage the insurer, government agency or employer who needs to make changes on the manner which they ensure their interests’ medical bills are covered. Thirdly, patients can be encouraged to be more engaged in their own care by asking questions, making suggestions, coordinating with health care providers, raising concerns and learning more about treatment plans. Patient advocates can speak for the people who are in health care facilities where there is need for changes in methods of service delivery to ensure that relevant alterations are made.

Fourthly, patient advocacy may be provided as part of vocational responsibilities. Some professionals in the health care system will find themselves having to advocate for patients at one point or another. One of the health care professionals who find it inevitable to make patient advocacy part of their job is nurses. Nurses are typically the health care professionals with the most interpersonal contact with the patient and must therefore liaise with different people for the patient’s sake (University Alliance). Patients’ families commonly rely on nurses to pass information and go an extra mile in taking care of patients. Nurses are at times there for patients more than even doctors are. Patients know that they can express their concerns and needs to nurses and find quick and effective solutions. The profession of nursing has been termed as a noble calling because of the extent which one may be called to attend to patients’ needs. The three core values which nurses adhere to when advocating for patients are: patient freedom from suffering, patient equality, and preservation of human dignity (University Alliance). It is the responsibility of a nurse to ensure that all patients are accorded the respect they deserve. This consequently leads to the preservation of a patient’s dignity at a time when a patient is unable to take care of themselves and act in dignified manners because of their condition. Nurses also encourage the fair and equal treatment of all patients with the same levels of professional compassion. Nurses obviously strive to free their patients from physiological suffering.

Levels of Patient advocates

There are several levels at which advocates may be categorized. The patient is their first own advocate. Other than advocating for oneself, below are three levels at which patient advocacy may be operated (Community Catalyst, n.d, p. 2);

  1. Policy level advocacy: This is advocacy from a legislative and executive level. The USA has seen Barrack Obama as a very vocal president on the issue of health care. This is policy advocacy. When the leader of the nation speaks about health care as an important issue which each American has a right to, then all the leaders on lower level start to take a keen attention on this issue. The result is the proposal and implementation of laws and regulation which support health care. This should be done explicitly for patient advocacy so that every American may have the right to a patient advocate whenever they are receiving the services of the patient advocates.
  2. System-level advocates: The health care industry is a system which may undergo changes. Some of the changes in the different units of the health care system, such as hospitals and pharmacies may affect the consumer/patient. Changes in prices of medication or costs of services in hospitals can affect patients’ ability to find access to health care. Systematic patient advocates can help vocalize and protect the rights of patients when changes in health care systems and units affect their ability to find access to health care services.
  3. Individual level advocates: Consumers/patients and their own families should be responsible for their own wellbeing. Professionals in charge of patient welfare are individual level advocates be they hired or family. These people share the experience of the patient by going through the health care system with them and vocalizing their concerns, needs, complaints and general position. Evidence shows that patients who take part in their own health care or appoint advocates generally get better health care out comes and experiences. Private patient advocates do not have any affiliations with health care providers. They operate independently as consultants for their patients and keep record of the patients’ health needs. The services of private patient advocates include: scheduling appointments, settling disputes relating to hospital bills, handling insurance claims, assisting with purchases of medical equipment, researching medical treatments, and attending doctor visits. Without governance these types of organisations could potentially take advantage of our most vulnerable.

Professional advocates provide services to patients and those supporting them who are navigating the complex healthcare system.  Advocates may work independently or in medical or other organisational settings, serving individuals, communities, disease‐specific populations, and family caregivers.  The role of an advocate is informational, not medical.  Advocates are committed to helping clients and client communities make informed choices and access resources;

Barriers and Facilitators of Patient Advocacy

There are some factors that act as barriers of the process of patient advocacy. On the other hand, there are facilitators for smooth and effective patient advocacy. Negarandeh et al (2006) found the following existing barriers and facilitators of patient advocacy in their research study using interviews on different people in the health care system. Barriers include: powerlessness, lack of law and code of ethics, lack of support for nurses, physicians leading, limited communication, risks involved in advocacy, peer loyalty, and low levels of motivation.

Powerlessness: Sometimes the nurses and health care professionals are following institutional instructions that make them unable to attend to the needs of the patient as advocates. Nurses may fear taking up advocacy roles because they may lose their job if things go wrong following their intervention.

Lack of Law and Code of Ethics: when there is no explicit code of ethics pertaining to patient advocacy, health care professionals do not know what to do. Some may over commit while others may be negligent. There is always need for a code of ethics and laws relating to patient care.

Lack of support for nurses: when nurses and other health care professionals are not supported institutionally and by patients’ families, they fail to be effective advocates. Advocacy is a job that requires cooperation and coordination.

Physicians leading: Many heath care professionals would like to follow the lead of a doctor who advocates for the patients. These leaders inspire the faculty to be keen on patient needs and conditions.

Limited communication: Communication is a vital component of patient advocacy. Smooth communication enables the patient to express their needs and health care professionals to respond accordingly.

Risks involved in advocacy: There is always the risk of things going wrong after the intervention of a health care professional for a patient’s sake. When this occurs, the professional gets in trouble. This discourages patient advocacy at all levels.

Peer loyalty: When the system is made up of people who are concerned for the patients then patient advocacy becomes a culture of a health care institution. When peers influence each other to negligence, there is low level peer advocacy for the different patients.

Low levels of motivation: When working conditions are poor, the nurses and health care professionals are de-motivated. A poor working environment does not inspire empathy and care. This lowers the levels of patient advocacy.

Facilitators in patient advocacy include: nurse-patient relationships,recognizing and paying attention to patients’ needs and conditions, nurses’ responsibility, physician as a colleague, and nurse’s knowledge and skills.

Nurse-patient relationships: The better the relationships between patients and their families and healthcare professionals the better the levels of patient advocacy. Patients and healthcare professionals should work together to reach the objective of health restoration.

Recognizing and paying attention to patients’ needs and conditions: When healthcare professionals pay attention to the needs of patients, it becomes easy to speak on their behalf. Attentive nurses and doctors and other health care professionals are a vital component to patient advocacy.

Nurses’ responsibility: Responsibility and accountability may be coupled to facilitate for higher levels of patient advocacy. When the nurse feels the ethical responsibility for the patient, then they are more likely to advocate for them way better than if they are negligent and without care.

Physician as a colleague: the doctor must be willing to function as a colleague of the other health care professionals. A surgeon who doesn’t listen to his assistants or a doctor who is too harsh to his nurses is a barrier. A physician who is a good colleague and the one who is easy to work with is a facilitator for patient advocacy.

Nurse’s knowledge and skills: The knowledge and skills of health care professionals is a facilitator for patient advocacy. Knowledgeable nurses, for example, may be an irreplaceable facilitator for the patients under their care.

Taken together, all of this information tells us what a patient advocate does: provision of services to patients as they navigate the healthcare systems; working directly with patients to give them a voice in their wellbeing; working to ensure that patient are well informed to make proper decisions concerning their wellbeing; playing an informational role; assisting patients in making informed decisions and accessing resources; ensuring that the wishes of a patient are the guiding force behind healthcare decisions; and collaborating with other members of the health team.

A patient advocate, however, should only: recommend specific treatment choices; avoid providing clinical opinions or perform medical care of any type, even if they possess clinical credentials; and avoid diagnosing or prescribing any medical/mental health treatment for clients, even if the advocate has additional licensure or training.  

Therefore, even if clinical capacity is present, a patient advocate must not provide a diagnosis, provide clinical opinions, recommend or prescribe any specific tests or treatment, or perform hands-on care.  Basically, if the service is clinical in whole or in part, the patient advocate must not provide it.  If such a clinical service does occur, the person providing it is no longer acting as a patient advocate. 

There is a significant conflict of interest when one person tries to wear both clinical and advocate hats.  Unbiased advocacy may diverge from the clinical care and advice that is provided to a patient.  To be truly patient-centered, a patient advocate must be vigilant to identify, disclose and avoid conflicts of interest, not create them.

The question of whether clients should be provided with an advocate or not needs to be taken on a case by case basis looking at the reasons, settings and status of current caregivers. Providing an advocate without taking a person’s capacity, needs and opinions into account is something I do not believe is necessary.  Many clients can successfully advocate on their own behalf, therefore they would not require referral to an advocate.  The question of whether all people are “offered” as opposed to being provided is different. Even people with capacity to advocate for themselves should be provided with information on how to access an advocate at any stage in their healthcare needs; they should be able to opt in and out of advocacy services according to the situation and reason. People who also may require assistance could be some people who may experience difficulty speaking up for them.  People need advocates in healthcare settings for all sorts of reasons, which can stem from assisting them to access services, change services, choose the appropriate service for them, communicate with service providers and negotiate difficult situations perhaps ones that may need conflict resolution. An advocate can also be asked to get involved if a person doesn’t feel like they are being treated as an equal in the process, when there is a clear difference between what the team is advocating for and their opinion of what is needed. Staff in healthcare settings would need the skills to ascertain this need and help support the person to make a decision if they felt they may need an advocate (Brown-Saracino, 2010). 

However there is a view that maybe advocacy tends to cast suspicion on the connection between the patient and his/her care provider, leading to an unprecedented appearance. This implies that patient and healthcare providers will be conflicting over finding a cure, and that wellbeing care authorities may not genuinely pursue the interests of the patient.

This description insinuates a complicated advocate-patient relationship.  Essentially, the connection between a patient’s best outcomes and wellbeing and health care provider forms the basis for all healthcare choices and relationships. As such, there’s no actual motive to presume that patients want anyone to make certain decisions on their behalves (Brown-Saracino, 2010).

I have wondered if the emerging trend of private advocates may cause ethical issues for the future.  I cannot help but imagine the possibilities of detrimental outcomes for people if they are required to pay for a service and that service is driven by its profit and bottom line.  If agencies charge for an advocacy service yet have no personal connection to a patient can they  find themselves not emotionally connected and therefore let things slip or not push hard enough or worse still convince people of the easiest path for their own time management.

References

Brown-Saracino, J. (2010). A neighborhood that never changes: Gentrification, social      preservation, and the search for authenticity. University of Chicago Press.

Clarke, K., Pederesen, K & Sanalucia, C. (2015). Patient Advocate: A Critical Role in Patient      Experience. The Beryl Institute. Retrieved from

Community Catalyst. (n.d). The Path to a People-Centered Health System: Next Generation         Consumer Health Advocacy. Retrieved from

           

Earp, J., French, E. & Gilkey, M. (2008). Patient Advocacy for Health care Quality:  Strategies    for Achieving Patient-Centered Care. Sudbury, Massachusetts. Jones and Bartlett.

Johnson, B., Abraham, M., Conway J., Laurel S., Edgman-Levitan, S, Sodomka, P., Schlucter, J.             & Ford, D. (2008). Partnering With Patients and Families to Design a Patient- and    Family –Centered Health Care System: Recommendations and Promising Practices.   California HealthCare Foundation. Retrieved from

Negarandeh, R., Oskouie, F., Ahmadi, F., Nikarvesh, M. & Hallberg, I. (2005). Patient     advocacy: barrier and facilitators. Retrieved from

University Alliance. (n.d). Nurses Advocating for Patients.

           

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