How to Advocate for PPS Care: Speak Up

Empowering yourself or a loved one to receive the best possible care is paramount, especially when dealing with complex health challenges. One critical aspect of this is understanding and advocating for Palliative Performance Scale (PPS) care. PPS isn’t just a medical acronym; it’s a vital tool for assessing a patient’s functional status in palliative care, guiding treatment decisions, and ensuring that care aligns with a patient’s evolving needs and wishes. This guide will equip you with the knowledge and strategies to effectively speak up and advocate for PPS care, transforming you into a proactive partner in the healthcare journey.

Understanding Palliative Performance Scale (PPS) Care 📊

To effectively advocate for PPS care, you must first understand what it is and why it’s so important. The Palliative Performance Scale (PPS) is a clinical assessment tool used primarily in palliative and end-of-life care. Developed by the Victoria Hospice Society, it provides a standardized way to measure a patient’s functional status, ambulation, activity level, self-care, intake of food and fluids, and conscious level.

The PPS is scored in 10% decrements, from 100% (fully ambulatory, normal activity and intake) to 0% (death). This objective scale helps healthcare teams:

Assess functional decline: It provides a clear picture of how a patient’s physical abilities are changing over time.
Guide care planning: The score helps determine the appropriate level of care, whether it’s more intensive support, symptom management, or end-of-life care.
Facilitate communication: It offers a common language for all members of the healthcare team, as well as for patients and their families, ensuring everyone is on the same page regarding the patient’s condition.
Aid in prognosis: While not a crystal ball, the PPS can offer a “best guess” projection of a patient’s proximity to the end of life, which is crucial for sensitive conversations and planning.

For example, a patient scoring 70% on the PPS might be fully ambulatory but have reduced activity due to their illness, perhaps spending more time resting. A patient at 40% would likely be mainly in bed, requiring considerable assistance with self-care. Understanding these distinctions is the first step in advocating for appropriate care.

Knowing Your Rights as a Patient 📜

Advocacy starts with knowing your rights. As a patient, you have fundamental rights that empower you to participate actively in your healthcare decisions. These rights include:

The Right to Informed Consent: You have the right to receive clear, comprehensive information about your diagnosis, treatment options, potential risks and benefits, and alternative treatments. This information should be presented in a way you can understand, allowing you to make educated decisions about your care. For instance, if a doctor recommends a new medication, you have the right to ask about its purpose, potential side effects, and how it might interact with other medications you’re taking.
The Right to Refuse Treatment: After receiving all necessary information, you have the right to refuse any recommended treatment, even if it could prolong your life. This decision should be respected, and healthcare providers should explain the consequences of your refusal. For example, if you decide against an aggressive treatment for a late-stage illness, your choice should be acknowledged, and the healthcare team should shift focus to comfort and palliative care, if that aligns with your wishes.
The Right to Privacy and Confidentiality: Your medical information is protected. Healthcare providers are obligated to maintain the confidentiality of your records, only sharing information with those directly involved in your care or as permitted by law. You have the right to access your medical records and request amendments if needed.
The Right to Respectful Care: You deserve care that respects your dignity, cultural beliefs, and personal values, free from discrimination. This means that regardless of your background, every healthcare professional should treat you with courtesy and professionalism.
The Right to an Interpreter: If you don’t speak the primary language of your healthcare providers or are hearing or speech impaired, you have the right to a qualified interpreter to ensure clear communication. Don’t hesitate to request this service.

Understanding these rights creates a foundation for effective advocacy. When you know what you’re entitled to, you can more confidently engage with your healthcare team.

Preparing for Appointments: Your Advocacy Blueprint 📝

Effective advocacy doesn’t happen spontaneously; it’s the result of diligent preparation. Each appointment with your healthcare provider is an opportunity to gather information, ask questions, and ensure your voice is heard.

Organize Your Medical Information

Before any appointment, gather all relevant medical information. This includes:

Medication List: A complete and up-to-date list of all prescriptions, over-the-counter medications, vitamins, and supplements you’re taking, including dosages and frequency. Bring the actual bottles if possible.
Symptom Log: Keep a detailed log of your symptoms, including their onset, duration, severity, and any triggers or alleviating factors. For example, instead of saying “I’ve been feeling tired,” specify: “For the past two weeks, I’ve felt profound fatigue starting around midday, making it difficult to concentrate. It worsens after any physical activity.”
Medical History: A concise summary of your relevant medical history, including past diagnoses, surgeries, hospitalizations, and family medical history.
Previous Test Results: If you have copies of recent lab results, imaging scans, or specialist reports, bring them along. Even if the provider has access to electronic records, having your own copies can be helpful.

Example: Sarah, who has a chronic autoimmune condition, maintains a binder with all her medical records. Before her appointment, she updates her symptom log, noting changes in pain levels, fatigue, and new symptoms like joint swelling. She also reviews her medication list to ensure it’s current. This preparation allows her to present a clear, comprehensive picture to her doctor, saving time and ensuring no critical information is missed.

Craft Your Questions and Concerns

Don’t go into an appointment without a clear agenda. Write down all your questions and concerns in order of priority. This helps you stay focused and ensures you address the most important issues first, especially when time with the doctor is limited.

Example questions related to PPS care:

“Given my current symptoms and functional abilities, what is my Palliative Performance Scale (PPS) score, and what does that mean for my immediate care plan?”
“How do you anticipate my PPS score might change in the coming weeks or months, and what adjustments to my care should we consider?”
“What resources are available for patients at my current PPS level to support my daily living and symptom management?”
“Can we discuss advance care planning based on my current PPS score and what my wishes would be if my condition declines?”
“What are the criteria for transitioning to a different level of care, such as hospice, and how would my PPS score factor into that decision?”

Bring a Support Person

Having a trusted friend or family member with you during appointments can be invaluable. They can:

Act as a second pair of ears: It’s easy to miss details or forget questions when you’re feeling anxious or overwhelmed.
Take notes: They can jot down important information, instructions, and answers to your questions.
Ask clarifying questions: They might think of questions you hadn’t considered or rephrase something to ensure clarity.
Provide emotional support: Simply having someone there can reduce stress and help you feel more confident.

Example: Mark brings his daughter to his appointments. She helps him remember what the doctor says, takes detailed notes on treatment changes, and sometimes asks follow-up questions that help Mark better understand his condition and options.

Mastering Communication with Your Healthcare Team 🗣️

Effective communication is the cornerstone of patient advocacy. It’s about more than just talking; it’s about being heard, understood, and actively participating in shared decision-making.

Be Clear, Concise, and Specific

When describing symptoms or concerns, avoid vague language. Be precise and provide context.

Instead of: “I’m feeling really bad.” Try: “My pain level has been an 8 out of 10 for the past three days, specifically a sharp, stabbing pain in my lower back that worsens when I try to stand or walk. It’s affecting my ability to get out of bed.”

When discussing your goals and wishes, be direct. Don’t assume your doctor knows what’s important to you.

Example: If comfort is your priority over aggressive treatment, explicitly state: “My primary goal right now is to manage my pain and maintain my quality of life, even if it means not pursuing treatments that could have significant side effects.”

Ask for Clarification and Explanation

Healthcare professionals often use complex medical jargon. It’s your right to understand everything about your condition and treatment.

“Can you explain that in simpler terms?” Don’t be afraid to ask your doctor to break down complex medical terms or procedures.
“Can you draw me a picture?” For visual learners, a simple diagram can make a world of difference.
“What are the pros and cons of this option?” Always ask about the advantages and disadvantages of each treatment choice.
“What happens if we don’t do anything?” Understanding the natural progression of your condition without intervention is crucial for informed decision-making.
“Can you write that down for me?” Ask for written instructions, medication lists, or a summary of the visit to review later.

Example: When Dr. Lee explains a new diagnostic procedure using terms like “biopsy” and “pathology report,” Maria might say, “Dr. Lee, could you please explain what a biopsy entails and what you’re hoping to learn from the pathology report in a way that’s easier for me to understand?”

Express Your Preferences and Values

Your values and preferences should drive your care plan. PPS care, in particular, emphasizes aligning treatment with a patient’s goals for quality of life.

“What matters most to me is…” Clearly articulate your priorities, whether it’s pain control, maintaining independence, spending time with family, or avoiding hospitalization.
“Based on my PPS score, how can we tailor my care to support my values?” Use the PPS as a talking point to guide the conversation towards personalized care.
“I’m concerned about…” Share your fears, anxieties, and concerns openly. This allows your healthcare team to address them directly.

Example: John, whose PPS score indicates significant decline, tells his doctor, “I understand my condition is progressing. My biggest desire is to remain at home with my family for as long as possible, even if it means less aggressive medical interventions. What steps can we take to achieve this, given my current PPS level?”

Document Everything

Keeping meticulous records is a vital advocacy tool. This includes:

Appointment Summaries: Note the date, time, healthcare provider’s name, key discussion points, decisions made, and follow-up actions.
Medication Changes: Document any new medications, dosage adjustments, or discontinued drugs.
Test Results: Keep a file of all lab results, imaging reports, and other diagnostic tests.
Correspondence: Save emails, letters, or faxes from healthcare providers, insurance companies, or pharmacies.

This documentation serves as a reliable reference, helps you track your health journey, and provides evidence if any discrepancies arise.

Building Your Support System 🤝

You don’t have to navigate the healthcare system alone. A strong support system can provide emotional, practical, and informational assistance.

Involve Family and Friends

Educate your close family and friends about your condition, treatment plan, and your preferences for care. They can be invaluable allies in your advocacy efforts.

Share information: Help them understand what PPS is and how it impacts your care.
Delegate tasks: Allow them to assist with tasks like scheduling appointments, picking up prescriptions, or managing medical bills.
Communicate your needs: Be open about what kind of support you need, whether it’s emotional encouragement, practical help, or just a listening ear.

Example: Maria’s daughter helps manage her appointment schedule and ensures her medication is organized. Her son takes over grocery shopping and household chores, allowing Maria to conserve her energy. They all understand her wish for comfort care, preparing them for future discussions with her healthcare team.

Seek Professional Patient Advocates

For complex cases or when you feel overwhelmed, consider engaging a professional patient advocate. These individuals are trained to:

Navigate the healthcare system: They can help you understand your insurance, find specialists, and coordinate care.
Communicate with providers: They can attend appointments with you, ask questions, and ensure your concerns are addressed.
Resolve issues: They can help with billing disputes, insurance denials, or accessing necessary services.
Provide unbiased support: They act as an objective third party, solely focused on your best interests.

Example: When David’s family struggled to understand his treatment options after a sudden decline, they hired a patient advocate. The advocate helped them decipher complex medical reports, facilitated clearer communication with the doctors, and ensured David’s end-of-life wishes were documented and respected.

Join Support Groups

Connecting with others who share similar health challenges can provide a sense of community, reduce feelings of isolation, and offer practical advice.

Online forums: Many conditions have active online communities where people share experiences and support.
Local groups: Check with hospitals, community centers, or disease-specific organizations for in-person meetings.
Share experiences: Learn from others’ advocacy journeys and share your own insights.

Example: After being diagnosed with a progressive neurological condition, Susan joined an online support group. Through this group, she learned about specific questions to ask her neurologist regarding future care and felt less alone in her journey.

Navigating Challenges and Overcoming Obstacles 💪

Even with the best preparation, you might encounter challenges in advocating for PPS care. Being prepared for these can help you respond effectively.

When Your Voice Isn’t Heard

It can be frustrating when you feel your concerns are dismissed or not taken seriously.

Reiterate your points: Politely but firmly restate your questions or concerns. “I appreciate your explanation, but I’m still unclear about X. Could you rephrase that?”
Bring a support person: A second person can lend weight to your concerns and help ensure they are heard.
Request a different provider: If a communication breakdown persists, you have the right to request a second opinion or to be assigned a different doctor.
Escalate through official channels: If fundamental rights are being violated or your care is consistently inadequate, you can contact the patient relations department of the hospital or clinic, or relevant regulatory bodies.

Example: Sarah felt her doctor was rushing through appointments and not adequately addressing her increasing fatigue. During her next visit, she brought her sister, who gently but firmly interjected to ensure Sarah’s questions about fatigue management were fully answered before the doctor moved on.

Dealing with Medical Jargon and Complexity

The healthcare system is inherently complex. Don’t be intimidated by medical terminology.

Ask for explanations in simple language: “Please use plain language so I can fully understand.”
Request written information: Ask for brochures, websites, or articles that explain your condition or treatment.
Take notes and research later: If you don’t understand something, note it down and research it after the appointment, or discuss it with your support person.

Managing Emotional Toll

Advocacy can be emotionally draining, especially when dealing with serious illness.

Practice self-care: Ensure you’re prioritizing your own well-being. This might include mindfulness, relaxation techniques, or engaging in hobbies you enjoy.
Lean on your support system: Don’t be afraid to ask for emotional support from loved ones or professional counselors.
Set boundaries: Understand your limits and don’t take on more than you can handle. Sometimes, delegating advocacy tasks is necessary.

Example: After a particularly challenging appointment, David felt overwhelmed. He reached out to his support group, sharing his frustrations and listening to others’ experiences. This helped him process his emotions and regain perspective.

Continuous Advocacy: Beyond the Appointment 🔄

Advocacy for PPS care isn’t a one-time event; it’s an ongoing process.

Follow-Up Diligently

Confirm next steps: Ensure you understand what needs to happen after an appointment, including referrals, tests, or follow-up visits.
Track results: Proactively follow up on test results and ensure they are discussed with you. Don’t assume “no news is good news.”
Adhere to care plans: Follow medication schedules and treatment recommendations, and report any difficulties or side effects.

Revisit and Revise Your Care Plan

As your PPS score changes, your care plan should adapt. Regularly discuss with your healthcare team whether your current plan still aligns with your goals and functional abilities.

Scheduled reviews: Ask for periodic reviews of your PPS score and overall care plan.
Proactive discussions: Don’t wait for a crisis. Initiate conversations about changes in your condition and how they might impact your care.
Advance care planning: Regularly update your advance directives, living will, and power of attorney for healthcare to reflect your evolving wishes, especially as your PPS score indicates progression.

Example: Linda, whose PPS score has gradually declined, proactively schedules a meeting with her palliative care team every few months. During these meetings, they review her current symptoms, adjust her medication for comfort, and discuss how her wishes for end-of-life care might need to be updated.

Educate Yourself Continuously

Stay informed about your condition, available treatments, and new developments in palliative care. Reliable sources include reputable medical websites, disease-specific organizations, and educational materials provided by your healthcare team. The more you know, the more effectively you can advocate for yourself.

By embracing these strategies, you can become a powerful advocate for PPS care, ensuring that your healthcare journey, or that of your loved one, is guided by informed decisions, personalized care, and unwavering respect for individual wishes. Remember, speaking up isn’t just a right; it’s a vital component of receiving compassionate and effective care.