Hospice Patients Alliance: Consumer Advocacy

When a Hospice Refuses to Release a Patient's Medical Record: What To Do
& What Should be Found in a Complete Medical Record

When problems have gone unresolved and you wish to file a complaint or take legal action against a hospice, you may wish to get a copy of your loved one's hospice medical record. You may wish to get a copy of the hospice medical record, even if you do not wish to file a complaint.

What Should be Found In the Medical Record

The hospice must keep accurate, complete and readily accessible patient care records. The regulation governing hospice records states:

42 CFR ch iv. part 418, Sec. 418.104
"Condition of participation--Clinical records."

A clinical record containing past and current findings is maintained for each hospice patient. The clinical record must contain correct clinical information that is available to the patient's attending physician and hospice staff. The clinical record may be maintained electronically.

(a) Standard: Content. Each patient's record must include the following:

  • (1) The initial plan of care, updated plans of care, initial assessment, comprehensive assessment, updated comprehensive assessments, and clinical notes.

  • (2) Signed copies of the notice of patient rights in accordance with § 418.52 and election statement in accordance with § 418.24.

  • (3) Responses to medications, symptom management, treatments, and services.

  • (4) Outcome measure data elements, as described in § 418.54(e) of this subpart.

  • (5) Physician certification and recertification of terminal illness as required in §§ 418.22 and 418.25 and described in §§ 418.102(b) and 418.102(c) respectively, if appropriate.

  • (6) Any advance directives as described in § 418.52(a)(2).

  • (7) Physician orders.

(b) Standard: Authentication. All entries must be legible, clear, complete, and appropriately authenticated and dated in accordance with hospice policy and currently accepted standards of practice.

(c) Standard: Protection of information. The clinical record, its contents and the information contained therein must be safeguarded against loss or unauthorized use. The hospice must be in compliance with the Department's rules regarding personal health information as set out at 45 CFR parts 160 and 164.

(d) Standard: Retention of records. Patient clinical records must be retained for 6 years after the death or discharge of the patient, unless State law stipulates a longer period of time. If the hospice discontinues operation, hospice policies must provide for retention and storage of clinical records. The hospice must inform its State agency and its CMS Regional office where such clinical records will be stored and how they may be accessed.

(e) Standard: Discharge or transfer of care.

  • (1) If the care of a patient is transferred to another Medicare/Medicaid-certified facility, the hospice must forward to the receiving facility, a copy of -

    • (i) The hospice discharge summary; and
    • (ii) The patient's clinical record, if requested.

  • (2) If a patient revokes the election of hospice care, or is discharged from hospice in accordance with § 418.26, the hospice must forward to the patient's attending physician, a copy of -

    • (i) The hospice discharge summary; and
    • (ii) The patient's clinical record, if requested.

  • (3) The hospice discharge summary as required in paragraph (e)(1) and (e)(2) of this section must include -

    • (i) A summary of the patient's stay including treatments, symptoms and pain management.
    • (ii) The patient's current plan of care.
    • (iii) The patient's latest physician orders. and
    • (iv) Any other documentation that will assist in post-discharge continuity of care or that is requested by the attending physician or receiving facility.

  • (f) Standard: Retrieval of clinical records. The clinical record, whether hard copy or in electronic form, must be made readily available on request by an appropriate authority.

The medical records you receive should be in chronological order. If the hospice is trying to hide something, they may place the records out of order. Sort the types of records and place them together so that all nurses notes and other records are together and in order. This way you will determine if any records are missing.

If you suspect a problem, look very carefully at the handwriting used by each staff member and compare it with other entries for a signature with the same name. The handwriting or signature must be similar (the same). If you look at the handwriting and it doesn't match, then there could be a forgery.

Many healthcare agencies do "chart auditing" where one staff member reviews the charts to make sure they are complete and comply with the standards for medical record keeping. This is appropriate. However, in a hospice that is seeking to cover up wrongdoing, the chart audit can be used to identify where documentation reveals wrongdoing and the record could be forged. Any staff member whose charting was re-written would never know it, but the records that are kept no longer indicate what really happen (and are illegal).

If you are going to court and believe the handwriting is not the same, you would be wise to hire a forensic handwriting analyst to review those notes and determine if they are forgeries (not the same). The attorney will be able to find a reliable forensic expert if that is the case. If the handwriting is not the same, that is itself a separate crime because the medical record is the legal record of what occurred, what treatments were provided, and so on.

In plain language, what types of records must be included in order to be able to ascertain what actually went on?

The records must contain the:

The admission sheet and initial assessment

Interdisciplinary Plan of Care (and updates)

All physicians' orders including those from the hospice's own medical director and the patient's own attending physician if he or she retained those services while under hospice care (the patient always does have the right to do so! You should also get a copy of the standing orders the hospice uses — if they use standing orders. You will know that they do have standing orders if a nursing note says something like, "XYZ medication begun per standing orders or per S.O."

All nurses notes for every visit by any R.N., LPN, or aide

All social worker, therapist, dietitian, chaplain, volunteer notes for every visit or phone call made. You must request these specifically again if you don't get them! You may learn much from what the hospice does not send you!

The medication administration record showing every medication given and when they were given. There should be a doctor's order for every medication administered. Some medications may be begun by standing medical orders (if the hospice uses these) but a physician must sign off on the administration of those medications.

The pharmacy records. It may be that you do not receive the patient's records from the pharmacy that dispensed the medications. Some larger hospice agencies have their own internal pharmacy but receive other medications from other pharmacies if they do not have a supply of certain medications. On the other hand, most hospices do not have their own pharmacy and use outside pharmacies. If you do not get a record of all medications dispensed for the patient by the pharmacy involved, then you must request them. Without the pharmacy records, you will not be able to compare the hospice's own Medication Administration Record with the pharmacy's records to determine if they agree or if they are complete.

If you suspect that your loved one was hastened to death, then you must look carefully at the medications that were given, what doses were given, how often they were given, and make sure that the interval between doses agrees with the recommended dosage interval for that medication. For example, instant release morphine lasts from 3-4 hours. If it is given in such an interval, then the patient's circulating blood levels are going to be dependent upon the dose given. If however the interval is shortened to 2 hours, for example, then the dose is doubled! If given every 1 hour, the dose is quadrupled!. If given every 15 minutes, the dose is 16 times the nominal dose of the tablet or liquid given. This is one way an overdose is achieved while leading the family to believe that the dosing is appropriate. They will say, "See? We're only giving X amount of morphine."

You also need to determine if medications that were needed by the patient to keep his condition stable were removed or withheld prematurely. At the very, very end stage active phase of dying, a patient may not benefit from other medications, but a way of hastening death is to remove regular medications that keep a chronically-ill patient stable — thereby precipitating an acute episode of whatever illness the patient suffers from.

Withholding blood pressure medications may make the patient have a stroke. Withholding heart medications may precipitate a heart attack or other adverse effects. Withholding diabetes medications may result in uncontrolled blood sugar levels, coma, and death. A hospice that is providing appropriate care will not remove needed medications until the very, very end when the patient cannot swallow those medications or take them by any route whatsoever and could not benefit at all from them.

Staff who intend death prematurely do lie about the patient's condition to justify stopping needed medications. We must recognize that some staff are pro-euthanasia and we must be vigilant to protect and advocate for the patient! Knowing what medications are needed and what the patient's actual condition is, helps the family know when medications should be continued or stopped because they are no longer helping. If you have questions, call the regular attending physician or an experienced hospice nurse who is pro-life to get more information to help you understand what is going on.

How to Obtain the Medical Records and
Who Has the Legal Right to Obtain these Records

The patient and/or Personal Representative of the Estate of your loved one (who has passed away) always have the right to get a copy of the chart. The hospice may charge a reasonable fee for copying the medical record. However, if the fee is unreasonably high, then that should be reported to the State licensing division, because it may be an attempt to discourage you from getting the medical record. If you are filing a legal action, you will have your attorney get the medical record. If you simply wish a copy of the record, you will need to have the Personal Representative of the Estate (of your loved one) write a letter requesting the chart from the hospice, sending the letter by certified mail, return receipt requested, and always keeping a copy for your records. If you are not the patient, the Personal Representative of the Estate, or filing a lawsuit, an attorney might be able to secure the medical records for other reasons. In that case, an attorney should be consulted.

If you have not received a reply within a couple of weeks, you can try physically going to the offices of the hospice and requesting the medical records right then and there (waiting there while the chart is copied), or write again requesting the records, again by certified mail, return receipt requested. If the hospice continues to ignore your request for the medical records of your loved one, then you can file a complaint with the State licensing division about the hospice refusal to provide a copy of the chart. See "filing a complaint." The letter of complaint should be sent in by the Personal Representative of the Estate of your loved one (who also wrote the letters requesting the chart originally). Enclose photocopies of the previous letters to the hospice along with the copies of the U.S. Postal Service Return Receipt cards showing that the hospice received your letters.

Refusing to provide a copy of a medical record to the Personal Representative of the Estate (or the patient) is itself a violation of the standards governing licensed hospices. A hospice with integrity will release the medical records to either the patient or the official Personal Representative of the Estate. Rogue hospices that knowingly violate the standards may refuse to provide these medical records voluntarily, because they wish to hide their violations and cover them up. They do not wish to be caught and do not wish to allow any evidence of their wrongdoing to be known by you. You should always contact a competent attorney if you have legal questions regarding a hospice's refusal to provide a copy of the medical records.

If you have filed a complaint with the State about a hospice refusing to release medical records, and the state tells you that they can't do anything, you can contact your local State Representatives or Senators for assistance. We are receiving reports of hospices refusing to release records of patients where there are allegations of malpractice, negligence and even involuntary euthanasia. If you're brave and not shy, you may wish to carry a picket sign outside the hospice stating, "Hospice unwilling to release medical records!" and you may get a quick release of the medical records. While that may seem outlandish, for those who have tried everything in terms of polite written requests, filed complaints and still not gotten the records, it may be worth trying.

Need to File Complaints to Board of Medicine,
Board of Nursing and Find Plaintiffs' Attorney
For Legal Advice

One important point to remember though, you will need to send a detailed complaint to the State Board of Medicine as soon as possible, because in some cases, the DEA will wait to see the findings of the State Board of Medicine. You can also file a complaint to the State Board of Nursing if a nurse was involved in administering a fatal dose of narcotic. It is wise to consult a medical malpractice attorney before filing your complaint to the Board of Medicine and it is also important to get a medical review by an independent physician.

If you wish to stop serious violations of patients' and human rights in hospice (including involuntary euthanasias/medical killings of patients), you may wish to get an independent medical review of your loved one's case. Asking a physician for a professional opinion about what happened can help explain why certain actions were appropriate or inappropriate, and whether they constituted medical malpractice, negligence or worse. Your attorney can assist you in getting the medical record if you haven't been successful yet. Most hospices will fight tooth and nail to prevent you from getting the medical records (if something truly terrible happened). If you don't have or know of a medical malpractice attorney in your area, you can search for a plaintiffs' attorney in your area.

It is very important that you try to find an attorney who files claims as a plaintiffs' attorney to represent you. If you get an attorney who handles medical malpractice, but regularly represents the corporations, you may not get the legal representative you deserve! Hospices have been known to falsify documentation, delete information, send incomplete records, stall and many other tactics that infuriate the families of the victims. A plaintiff's attorney will be able to successfully overcome the obstacles that hospice corporations routinely throw in the way of families seeking the truth (and a full, accurate copy of the medical record).

Taking the step by step approach to achieving justice will help make it more likely that the truly egregious violations of standards of care are noted (some you may miss, not being a physician) and corrected through the government justice departments and local district attorney's office. Having a medical malpractice attorney help you will assure that the complaint to the Board of Medicine and Board of Nursing is written in such a way that the allegations are not capable of being misunderstood or brushed aside.

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