Over My Dead Body
If you died today, who would you want to have access, or not, to your medical records? The Health Insurance Portability and Accountability Act (HIPAA) ensures that personal health information (PHI) is not wrongfully used, improperly accessed, or shared. Did you know that HIPAA also protects an individual’s right to privacy for up to 50 years after their death?
There are many reasons why loved ones may need access to a deceased individual’s medical records. Sadly, families frequently face difficult challenges in trying to access their deceased loved one’s medical records at a time when they may desperately need them the most. It’s both disappointing and concerning to see that discussions and prospective planning about access to one’s medical records after death are often not emphasized throughout life, especially during conversations about end of life care or end of life care planning.
In the United States alone, over 200,000 people have died from COVID19, with no end to the pandemic in near sight. Many of these individuals received care at the hospital, with some patients hospitalized for weeks in intensive care units, receiving specialized care while on ventilators. Families are now receiving astronomical bills for outstanding balances while grieving the death of their loved ones. Some families have tragically had more than one family member die from COVID19. In order to carefully review medical bills as well as potentially appeal insurance denials, families need access to all medical records detailing their deceased loved one’s care. Families may face push back and information blocking as they seek to request access to their deceased loved one’s PHI due to healthcare delivery organizations’ (HDOs) staff uncertainties about HIPAA and lack of individual proper documentation.
The reality is many individuals do not have estate plans, wills, a designated personal representative, an executor of an estate, or power of attorney. A vast majority of the general population, especially vulnerable populations, traditionally marginalized communities, and immigrant populations with limited English proficiency, do not even know about the existence of or have equitable access to proper estate planning, preparing a will, noting a power of attorney, or designating a personal representative.
Many frequently say:
- These processes are strictly for the wealthy, not people like me.
- I don’t have an estate or possessions of value to need estate planning.
- I could never afford an attorney to prepare the paperwork to designate a personal representative.
The words we use matter and the words that are currently used to detail the processes, policies, and workflows dictating how to access a deceased individual’s medical records create a significant barrier for the majority of lay individuals and health citizens in our country.
Here are some other examples of why families may need access to their deceased loved one’s medical records:
- They may want to better understand their loved one’s medical history, especially in the context of cancer, hereditary conditions, cardiac conditions, and other comorbidities.
- They may be interested in passing down medical records as part of their family legacy.
- They may need access to medical records in cases of medical errors or malpractice.
- They may need access to help with the grieving process and to provide understanding and closure about their loved one’s last weeks, days, and moments of their life.
- They may want to contribute records to ongoing clinical or scientific research, whether it is for COVID19 or other diseases, like cancer or rare disease.
- They may need to handle administrative issues with respect to workman’s compensation claims, social security disability claims, or life insurance policies.
Whatever the reason may be, everyone should discuss what to do with their medical records when they die.
There are a number of ways that medical records of the deceased may be accessed. If a will is in place, a personal representative or an executor of the estate may be specified who will be authorized with right of access. In situations where there is no will or appointed personal representative, state laws may recognize a surviving family member through a hierarchy process as the personal representative.
The HIPAA Privacy Rule 164.502(g)(4) permits covered entities to “disclose a deceased individual’s medical records to family members and others who were actively involved in the care or payment for care of the deceased prior to death, unless doing so is inconsistent with any prior expressed preference of the individual that is known to the covered entity.”
Therefore, family members and others such as patient advocates, who had access to a patient’s medical records during their living years, designated by a HIPAA authorization form, are recognized to continue with those access rights after the patient’s death.
This is critically important! While there are clearly rules and policies that provide a framework for accessing the PHI of the deceased, this does not mean that things work smoothly and seamlessly. Expect to encounter problems and proactively prepare accordingly.
At minimum, everyone should specify in HIPAA authorization forms who should be granted access to your medical records, emphasizing in life and after one’s death. Including a copy of this designated individual’s legal photo ID, specifying their relationship to you, as well as providing their contact information can make all the difference in helping a hospital or HDO confirm with reasonable assurance your loved one’s role in your care and consequent right to access after death.
We all must plan accordingly so as to not risk having our loved one’s getting locked out from accessing our medical records after our death or to prevent our record’s from being accessed by family that normally would not have access. For example, many marriages and life partnerships end up in separation or divorce. A new spouse or life partner may be granted access but may not share that access with biological children. Loved one’s may be estranged. Many relationships in life are complicated. Death is often a strong catalyst for many tensions to rise to the surface that may unnecessarily complicate accessing medical records upon a loved one’s death.
With a thorough understanding of the many complexities that families routinely encounter in accessing their deceased loved one’s medical records, Unblock Health has thoughtfully and strategically incorporated simple, digitized solutions to best support all patients and their families to proactively prevent barriers and discrepancies in rightfully and legally accessing the deceased’s PHI. These solutions simultaneously support HIM professionals to ensure HIPAA compliance.
Reach out for a demo today to see how Unblock Health is the patient access digital front door healthcare needs now, in sickness and in health, even after death do us part.
Yours in Unblocking Health,
Shahid Shah and Grace Cordovano