By Stacey Savarese, RN, BSN, BSW, CCM
Navigating healthcare for aging parents in Philadelphia or anywhere comes down to one word most families never think about until it is too late: access.
Your father is in an emergency department at 11 PM. You call the ED. The nurse says she cannot tell you anything “because of HIPAA”. You drive on over. The doctor has already left because their shift ended, and the new one hasn’t been in yet.
Nobody will tell you what medications he was given, what the plan is, or whether he is being admitted. You are his daughter. You are listed as his emergency contact. It does not matter. Beyond frustrating…
I have watched this play out for 30 years, from the Emergency Department and ICU, from Home Care and Hospice, from inside an insurance company, and from Utilization Review where I fought denials for patients and hospitals.
Families get shut out because nobody explained the law to them, and because the paperwork that would have opened every door takes twenty minutes on a quiet Sunday and nobody did it.
I hope this guide fixes both problems.
The first half is for the family in the hallway tonight. The second half is for the family who still has that Sunday.
QUICK ANSWER
How do I get access to my parent’s care? If your parent is awake and able to speak, they can tell the staff, out loud, to share information with you, and HIPAA allows it without a signed form. If your parent cannot speak for themselves and there is no healthcare power of attorney, Pennsylvania law names a default decision maker, and an adult child is high on that list. Say those two things to the nurse and ask for the social worker. Then, before your parent leaves the hospital, get the three documents signed that prevent this from ever happening again: a HIPAA release, a Durable Healthcare Power of Attorney, and Patient Portal Proxy Access.
What HIPAA Says, and What Staff Think It Says
Here is the part I want every family to memorize. HIPAA does not require a signed release before a provider can talk to a family member. It permits providers to share information with family and friends who are involved in a patient’s care, in three situations:
HIPAA AND FAMILY, IN PLAIN TERMS
- Your parent is present and able to decide. If your parent agrees, or is given the chance to object and does not, the provider can share information with you. Verbal agreement counts. No form required. So, ensure you are in the room at Rounds! Yes, early in the morning!
- Your parent is not present, or cannot decide. The provider can use professional judgment and share what is relevant to your involvement in their care. A nurse telling a son that his mother was given pain medication and is being admitted is allowed.
- Your parent is incapacitated in an emergency. The provider can share information if they judge it to be in the patient’s best interest.
This is federal regulation, not my opinion. The U.S. Department of Health and Human Services explains it in its guidance for family members and friends. Read it once. Save it on your phone.
So why does the nurse say she cannot talk to you?
Because she was trained in her yearly compliance video that said, “when in doubt, don’t,” and because a HIPAA violation is a fireable offense, while refusing a family member is not. Staff over-apply HIPAA because it is safer for them. No one wants to get in trouble. You can make this easier for them, but making it your job for them to feel safe to talk to you, and the fastest way to do that is to say the right verbiage. And make sure it is correct.
If the Crisis Is Happening Right Now
Nothing is signed. Your parent is in the hospital. Work through these in order.
Step 1: Get your parent to say it out loud (under no duress of course)
If your parent is awake and can make decisions, the whole problem goes away in one sentence. Walk in, or get the nurse to put the phone to your parent’s ear, and have your parent say: “This is my daughter. You can talk to her about everything.” Then ask the nurse to document it. Most electronic records have a field for exactly this. From that moment, the unit can talk to you durig this episode of care, as long as your parent does not decide to rescind that verbal directive.
Step 2: If your parent cannot speak for themselves, tell them who you are under Pennsylvania law
Pennsylvania’s Advance Directive law, Act 169 of 2006, includes a default list of who makes healthcare decisions when a patient cannot and no healthcare power of attorney exists. It is called the health care representative provision, and the order is: spouse (and adult children from a prior relationship, together), then adult child, then parent, then adult sibling, then adult grandchild, then a close friend who knows the patient’s wishes. This applies once the attending physician has determined the patient cannot make their own decisions.
Most families do not know this. Many nurses do not know this. Compliance usually doesn’t get into this level of detail during the yearly HIPAA compliance mandates.
If you are the only adult child of a widowed parent who is confused or unresponsive, you are likely already the legal decision maker, and the hospital has to talk to you.
Step 3: Ask for the Social Worker or Case Manager, by name
Every unit has one. They know the law, they know the forms, and getting families connected is their job. Do not wait for them to find you. Ask the nurse or the unit clerk: “Who is the social worker for this unit today, and how do I reach them?”
If it is a weekend, ask for the House Supervisor.
If you get nowhere, ask for Patient Relations or the Patient Advocate office. Every hospital in the region has one, and calling it changes the tone of a conversation.
Step 4: Get the paperwork signed while your parent is still able
This is the step families skip because they are overwhelmed, and it is the one that matters most. A parent admitted with Pneumonia today may not be able to sign anything by Thursday. Ask the social worker for two things:
- The hospital’s HIPAA authorization form. Your parent signs it, names you, and the hospital can talk to you for the rest of the stay.
- A Pennsylvania healthcare power of attorney. Most hospitals keep the State Advance Directive form on every unit.
In Pennsylvania, it needs two adult witnesses.
It does not need a notary.
Nurses cannot always witness, but social work, chaplaincy, or a second family member can. It takes ten minutes.
Do this on day one if your parent is cognitively able to fill this out. Not on the day of discharge, when everyone is rushed and your parent has been up all night.
Step 5: Get the Emergency Contact confusion out of the way
Being listed as the emergency contact means the hospital will call you if something happens. It does not mean they will tell you anything when you call them. Families assume the two are the same. They are not. The HIPAA release is what gives you information. The Durable Healthcare Power of Attorney (not the general POA that address more financial and estate matters) is what gives you decision authority. The Emergency Contact field gives you a phone call, especially when they need to discharge.
Clinical Note: When a family member pushes back on me with “she said you can talk to me, would you be able to document it so the whole team is aware” I do not get defensive. I get relieved. It means I have someone who will give me the home medication list, tell me the truth about the stairs, and be there at discharge. The families who fight for access are the families who make my job easier, so we are usually very relieved to meet you.
If You Still Have a Quiet Sunday
Your parent is fine, for now. This is the list. Twenty minutes per item. Do them in this order.
THE ACCESS CHECKLIST
- HIPAA release at every practice they frequent: Primary care, Cardiology, the Pharmacy, the Dialysis center, the eye doctor. Each one has its own form and its own file. One signed release at the PCP office may not be as effective as at the specialist.
- Healthcare Durable Power of Attorney and Living Will. One document in Pennsylvania, free from the Pennsylvania Department of Aging or from any hospital’s advance care planning page. Two witnesses. Name a backup agent. Photograph every page and keep it on your phone. Give a copy to the primary care office so it is in the record before anyone needs it.
- Patient portal proxy access. Penn Medicine, Jefferson Health, Temple Health, Main Line Health, and most other systems in the region use MyChart. Proxy access lets you see results, visit notes, medications, and appointments, and message the office. Your parent grants it from inside their own portal in a few minutes, or the office does it with the signed release.
- Medicare authorization. Medicare will not discuss your parent’s claims, coverage, or appeals with you without its own form. It is called the Authorization to Disclose Personal Health Information (form CMS-10106), and you file it through Medicare.gov or by mail.
If your parent has a Medicare Advantage or Part D plan, each plan has a separate authorized representative form. Get all of them.
- Pharmacy. Ask the pharmacy to add you as an authorized person on your parent’s profile. This is very similar to the the proxy on the patient portal. You are identified as the caregiver. Then you can call about refills, interactions, and what was picked up.
- Financial Power of Attorney. Separate document, separate purpose. Medical decisions and paying the hospital bill are handled by two different pieces of paper.
This one usually needs a notary in Pennsylvania and is worth a lawyer. - The one-page snapshot.
Medications with doses, allergies, diagnoses, doctors, insurance card photos, pharmacy, code status, and where the advance directive is.
In the wallet, on the fridge, on your phone. The Family Caregiving Coordination Toolkit has a fillable version. - A conversation about what your parent wants. Not the forms. The talk. Does she want CPR at 88? Does Dad want to be in a nursing home? You cannot advocate for wishes you have never heard or discussed.
Access From Every Angle
Paperwork is the biggest barrier, but it is not the only one. Here are the others I see stop families, and what gets past each.
When you live far away
Everything above still works by phone. You may request to get on speaker with the nurse and your parent for the verbal authorization.
Ask the Social Worker to fax or email the HIPAA form and the advance directive, have your parent sign with two witnesses on the unit, and have it scanned back in.
Ask to be included in Rounds by phone, and ask for the physician’s callback time rather than waiting by the phone all day.
If it is going to be a long stay or a complicated discharge, an Aging Life Care manager (a nurse or social worker you hire privately) is worth the cost. The Aging Life Care Association has a directory for the Philadelphia area.
Solace.org is also a national directory for Medicare insured patients.
When your parent has dementia and never signed anything
The Act 169 health care representative rule covers most medical decisions, including consent to treatment and discharge planning. It does not cover everything.
Finances, housing, and refusing all treatment can require guardianship through the county Orphans’ Court, which is slow, public, and expensive. Before you go that route, talk to the hospital social worker, and if your parent still has good days, a physician can document capacity on a good day and your parent can sign a healthcare power of attorney then.
Capacity is decision specific and can come and go that only a physician can determine. That window is real and families miss it.
When your parent refuses to let you in
A competent adult can refuse to share information with their children, and the hospital will honor that. What you can still do: ask the social worker to speak with your parent about why they are refusing, ask the physician whether they have concerns about capacity, and, if you believe your parent is unsafe at home and cannot protect themselves, call the Philadelphia Corporation for Aging Helpline at 215-765-9040 to request a protective services assessment. In the surrounding counties, the Area Agency on Aging for your respective county handles the same role.
When language or hearing is the barrier
Hospitals that accept Medicare are required to provide a qualified medical interpreter, in person or by video, at no cost.
A family member should not be the interpreter for medical decisions.
If your parent is hard of hearing, ask for a pocket amplifier or a written summary of the plan. You would be surprised how many “confused” older patients simply could not hear the doctor, and feel alienated in the decision making process.
When you want the records
Under HIPAA, your parent, or you as their personal representative under the healthcare power of attorney, has the right to a copy of their medical records, and the provider has 30 days to deliver them.
Ask the Health Information Management or Medical Record department, not the nurse.
For a discharge summary, ask the Case Manager for a printed copy before you leave. It is the document every next provider will want.
When the insurance company is the wall
This is where my years inside the payer comes in handy.
Insurance companies have their own authorization forms, separate from the hospital’s, and they will not discuss a denial with you until one is on file.
If your parent has Medicare Advantage and the plan denies rehab or home care, the appeal clock is short, often 60 days for a standard appeal and much shorter for an expedited one. Ask the hospital case manager for the denial letter in writing, ask what the appeal deadline is, and file the plan’s authorized representative form the same day. I cover this step by step in When Your Parent Can’t Go Home.
When the hospital wants to discharge and you are not ready
If your parent has Medicare, the hospital must give you a notice called the Important Message from Medicare. It lists the phone number for the Quality Improvement Organization. Call it before your parent leaves the building, and the discharge is on hold while they review. You do not need a lawyer. You need the notice and a phone.
Clinical Note: The single most common access failure I see is not HIPAA. It is a family that shows up on discharge day with no medication list, no idea what insurance the parent has, and no one who has met the Case Manager. By then, the plan is written and. Show up on day one with the snapshot and the paperwork, and you are part of writing it.
Philadelphia and Surrounding County Front Doors
Once you have access, you need somewhere to point it. In Pennsylvania, the county Area Agency on Aging is the front door to the free in-home assessment, in-home help through the OPTIONS program, Medicaid long-term care (Community HealthChoices) applications, free Medicare counseling through PA MEDI, the Long Term Care Ombudsman, caregiver support, transportation, and meals.
Call before the crisis. An assessment already on file speeds up every application that follows.
AREA AGENCIES ON AGING
- Philadelphia: Philadelphia Corporation for Aging (PCA) Helpline, 215-765-9040. Also the number for elder abuse and neglect reports.
- Bucks County: Bucks County Area Agency on Aging, 267-880-5700.
- Montgomery County: Montgomery County Aging and Adult Services, 610-278-3601.
- Delaware County: County Office of Services for the Aging (COSA), 610-490-1300.
- Chester County: Chester County Department of Aging Services, 610-344-6350.
For a parent who is frail enough for nursing home level care but wants to stay home, ask the Area on Aging about LIFE, (Pennsylvania’s version of PACE).
It covers doctors, medications, day center, transportation, and home care under one program.
Philadelphia has several LIFE programs and each surrounding county has at least one.
Frequently Asked Questions
Can a hospital refuse to talk to me because of HIPAA if my parent says it is okay?
No. If your parent is present, able to decide, and agrees, HIPAA permits the provider to share information with you. Ask the nurse to document the verbal authorization. If staff still refuse, ask for the social worker or Patient Relations.
Who makes medical decisions for my parent in Pennsylvania if there is no power of attorney?
Pennsylvania’s Act 169 names a default health care representative in this order: spouse, adult child, parent, adult sibling, adult grandchild, then a close friend familiar with the patient’s wishes. It applies after the attending physician determines your parent cannot make their own decisions.
Does a healthcare power of attorney need a notary in Pennsylvania?
No. It requires two adult witnesses. Most hospitals can help you complete one on the unit. A financial power of attorney is a separate document with different rules and usually does need a notary.
Does being the emergency contact give me access to information?
No. It means the hospital will call you if something happens. To receive information you need a HIPAA release or your parent’s verbal permission. To make decisions you need a healthcare power of attorney or standing under Act 169.
Can I talk to Medicare about my parent’s coverage?
Only after your parent files the Medicare Authorization to Disclose Personal Health Information (form CMS-10106). Medicare Advantage and Part D plans each have their own separate form.
Who do I call first in Philadelphia if my parent needs help at home?
The Philadelphia Corporation for Aging Helpline at 215-765-9040. They schedule a free in-home assessment and connect you to in-home services, caregiver support, and Medicaid waiver applications. In Bucks, Montgomery, Delaware, and Chester counties, call the Area Agency on Aging listed above.
Access is not something the system gives you. It is something obtainable with the right sentence and the right piece of paper.
If your parent is in the hospital tonight, When Your Parent Can’t Go Home covers observation status, discharge, denials, and appeals step by step, with the worksheets I use at the bedside. If you still have your quiet Sunday, the Family Caregiving Coordination Toolkit gives you the one-page snapshot, medication tracker, and appointment log as fillable PDFs. And if all of this is landing on you at once, start with the free Caregiver Burnout Triage Checklist.
Looking for local support? Explore The Caregivers Directory to find home care agencies, geriatric practices, elder law attorneys, senior centers, transportation, and caregiver resources throughout Philadelphia, Bucks, Montgomery, Delaware, and Chester counties.
About the Author
Stacey Savarese, RN, BSN, BSW, CCM has spent more than 30 years in healthcare, starting as a geriatric social worker in Philadelphia and moving into nursing in the emergency department, ICU, CCU, and PACU, followed by home care, palliative care, and hospice. She worked as a case manager in one of the first Patient Centered Medical Home practices in the country, moved inside an insurance company to learn how coverage decisions are made, and spent years in Utilization Review. She founded The Caregivers Directory to give Philadelphia-area families the insider knowledge she wished they had.
Medical and Informational Disclaimer
The Caregivers Directory provides general information and resources for educational purposes only. The content on this site, including this article, is not medical, legal, or financial advice and should not be used as a substitute for guidance from a qualified physician, licensed healthcare provider, attorney, or financial professional. If you are experiencing emotional distress or a mental health crisis, contact a qualified professional, or call or text 988 in the United States to reach the Suicide and Crisis Lifeline. Program availability, eligibility requirements, accepted insurance plans, services offered, and areas served may change over time. Always contact providers, agencies, and government programs directly to confirm current details before making care decisions. If you believe your loved one is experiencing a medical emergency, call 911 immediately.
