Patient Advocacy & Healthcare Rights at the End-of-Life
Navigating end-of-life care can be complex. Ensuring a patient’s healthcare wishes are respected is key to them receiving dignified care. Patient advocacy helps people and their families communicate with healthcare providers and understand their healthcare rights.
Key Takeaways
- Patient advocacy is particularly important at the end of life to make sure a person’s final wishes are honored.
- Healthcare advocates can help with communication in a variety of situations.
- Knowing your fundamental healthcare rights at the end of life can help you obtain the desired result.
What Is Patient Advocacy and Why Is It Important at the End of Life?
Patient advocacy involves promoting the interests and needs of people receiving medical treatment. It’s particularly important at the end of life as patients may face complex medical decisions. A patient advocate helps navigate these challenges, making sure healthcare providers understand and respect the person’s preferences[1].
A dedicated patient advocate can be a family member, friend, or professional. They play a crucial role in communicating the person’s needs and securing appropriate care. The benefits of having an advocate include improved communication with healthcare providers and higher-quality care that matches the individual’s wishes.
Who May Benefit From a Healthcare Advocate?
People in many different situations can benefit from the guidance of a healthcare advocate.
Patients With Complex Medical Conditions or Chronic Illness
Those with complex medical histories or multiple chronic conditions may need assistance managing their care plans. Advocates can help clients summarize information and communicate effectively with their healthcare team.
Elderly Patients With Diminished Cognitive Function or Mobility
Older adults with cognitive decline or mobility issues often benefit from having an advocate. They may need support navigating the healthcare system and making informed decisions.
Patients Without a Strong Support System
Individuals who lack a network of family or friends to support them often use professional advocates.
Patients Considering Palliative or Hospice Care
Advocacy can benefit those transitioning to palliative or hospice care. An advocate can help them maintain comfort, dignity, and respect in their remaining time.
Families in Need of Support for a Loved One
Families may need guidance and support in making difficult decisions. Advocates can help with these tough choices and make sure the loved one’s wishes are followed.
Understanding Your Healthcare Rights at the End of Life
Patients have several fundamental healthcare rights at the end of life. Understanding and exercising these rights is crucial.
Although the following rights exist for most individuals, exceptions apply for those subject to guardianship orders.
Sarah-Jane Williams, Unregistered Barrister
The Right to Informed Consent
Everyone has the right to receive comprehensive information about their medical condition, treatment options, and potential outcomes. This empowers them to make informed decisions about their care[2].
The Right to Refuse Treatment
Patients can refuse any treatment they don’t wish to receive, even if it’s life-sustaining. They have the right to leave hospitals or clinics if they no longer wish to receive treatment there.
The Right to Pain Management
Everyone has the right to effective pain management and palliative care. These treatments help people remain as comfortable as possible in their final days.
The Right to Privacy and Confidentiality
Everyone is entitled to confidentiality regarding their medical information. They’re entitled to discuss and decide on their healthcare in private.
How Do I Ensure My Healthcare Wishes Are Respected?
Advance care planning is essential for ensuring healthcare wishes are respected. This involves creating legal documents such as living wills and durable powers of attorney.
A living will, also known as an advance directive, is a document that specifies a patient’s preferences for medical treatment and life-sustaining measures. Medical professionals refer to it when someone can’t make decisions for themselves because of unconsciousness, terminal illness, cognitive decline, or serious injury. It can include instructions about the following:
- Resuscitation
- Mechanical ventilation
- Tube feeding
- Dialysis
- Palliative care
- Pain management
- Organ donation
A durable power of attorney designates an individual to make healthcare decisions on behalf of an incapacitated patient. This person can legally make decisions for the patient about:
- Medical treatments
- Healthcare providers
- Medical facilities
- End-of-life care
A power of attorney doesn’t override a living will unless it contains express permission for a representative to overturn your end-of-life decisions.
Sarah-Jane Williams, Unregistered Barrister
How Do I Advocate for Myself or a Loved One?
Effective advocacy involves communicating clearly, asking questions, and seeking the best care possible. Here are practical tips for advocating at the end of life:
- Communicate clearly and often. Inform healthcare providers of the patient’s wishes. Legal documents such as living wills can be updated at any time, but it’s important to let everyone, including the healthcare team and family members, know about changes.
- Ask questions. Don’t hesitate to ask questions about treatments, procedures, and care plans.
- Seek second opinions. If uncertain about a diagnosis or treatment plan, seek a second opinion.
- Keep detailed records. Carefully record all medical information, including treatments, medications, and communications with healthcare providers.
- Use hospital resources. Many hospitals have patient advocates who assist in resolving issues and ensuring patient rights are upheld. Don’t hesitate to contact these resources.
Upholding End-of-Life Healthcare Rights
Patient advocacy is very useful at the end of life, as it helps people receive care that respects their wishes and dignity. By taking proactive steps, such as advance care planning and effective communication, patients and their families can navigate the healthcare system more effectively.
With advocacy and an understanding of healthcare rights, patients can achieve a dignified and peaceful end-of-life experience. Remember that support is available during this difficult time.
Written by Nathan Whiteoak
Nathan Whiteoak, a graduate in Natural Sciences from the University of Cambridge, has developed a diverse writing portfolio over the last 14 years. As a writer and editor, Nathan has worked on a variety of projects, delivering content in the fields of technology, health, medicine, travel, and home services. Clients rely on Nathan for accurate content, a consistent brand voice, and a fast turnaround time. His personal interests include hiking, swing dancing, writing short fiction, and circus skills.
Edited by Ani Lahiri
Anitra Lahiri earned her bachelor's degree in English from NYU and holds certifications in Yin Yoga, Prenatal Yoga, Reiki I and II, Natural Health, and SMART Recovery Facilitator Training. She is also completing her 500-hour hatha yoga teacher training in December 2024. By leading addiction recovery meetings, teaching yoga, and writing about wellness, Anitra helps people all over the world bounce back from addiction, incarceration, or traumatic life events. Her passion is encouraging people to tap into their inner wisdom. https://anitralahiri.com/
Sources
National Cancer Institute. (n.d.). Patient advocate. Sourced from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/patient-advocate
Nichols, C., Papadopoulos, K., & Vardar, M. (2018). Patient advocacy. In S. K. Shehata (Ed.), Patient safety and quality: An evidence-based handbook for nurses (Vol. 3). Agency for Healthcare Research and Quality (US). Sourced from https://www.ncbi.nlm.nih.gov/books/NBK430827/#