Information for Patients and Families

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COVID-19 Pause Notice

3/16/2020: Thank you for your interest in the Last Wish Program (LWP); your generous consideration for research donation is important to us. In response to the current COVID-19 pandemic, the LWP will not be enrolling any new patients or performing any autopsies for existing patients until further notice. Please refer to our webpage for updates.

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Who can participate in the Last Wish Program (LWP)?

Memorial Sloan Kettering Cancer Center (MSK) patients with a cancer history who are expected to pass away within a three-hour drive from MSK in New York, New Jersey, Connecticut, Pennsylvania, or Delaware are eligible.

The LWP is not able to accept patients with certain serious infectious diseases — please contact us for more information.

Patients who have not been treated at MSK are not eligible to participate in the LWP.

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When is a good time to think about participation in the Last Wish Program?

Patients and families are welcome to contact the LWP at any time during the patient’s disease course, although ideally, they should consider participation in the LWP before the patient is actively dying. This will allow the LWP and the patient/family sufficient time for communication regarding their participation. Currently, the LWP has numerous patients who have consented to our program who are in remission or only visit their MSK clinician in an outpatient setting.

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How can I participate in the Last Wish Program?

Interested patients should contact the LWP (646-888-3253 or pthLastWish@mskcc.org) or discuss the LWP with their MSK physician while they are still able to make their own decisions and complete forms. A member of the LWP will then follow up with you personally and may either conduct a phone consent (if technologically able) or visit you at your next MSK appointment (limited to MSK’s New York City locations).

Parents and legal authorized representatives may provide consent on behalf of pediatric patients and cognitively impaired patients, respectively. The LWP must have the signed consent forms before we can work with the patient’s funeral home to arrange transport to and from MSK (if needed). On occasion, we may be unable to confirm transport and will not be able to collect tissues from that patient.

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Why must consent be signed prior to patient death?

The LWP is an MSK Institutional Review Board-approved protocol and must therefore adhere to the protocol guidelines. The LWP is only permitted to proceed with the research donation procedure after the patient or her/his legal authorized representative has signed consent prior to the patient’s death. Please note that we are unable to accept consent from patients’ legal authorized representatives after they have passed away.

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Can I decide which samples may or may not be donated?

Yes. At the time of consent, the patient/legal authorized representative may denote preferences for autopsy method, any restrictions, and details of specimen procurement.

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What actions should I take after signing consent to the Last Wish Program?

You will be asked to provide contact information for the funeral home and hospice (if applicable). The LWP does not help in funeral home or hospice selection. The LWP must have the signed consent forms before we can work with the patient’s funeral home and/or hospice to arrange transport to and from MSK (if needed).

If, at time of consent, funeral home and/or hospice information is not available, we ask that the patient or legal authorized representative remain in contact with us regarding updates. Funeral home and hospice selection are not needed at time of consent, however, a funeral home should be chosen in a timely manner after the patient’s death. On occasion, we may be unable to confirm transport and will not be able to collect tissues from that patient.

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After I consent, can I change my mind?

Yes. You can change your mind at any time by notifying the LWP or your MSK physician.

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Is there a cost to participating in the Last Wish Program?

No. All LWP-related costs are covered by the LWP, including any excess costs required to transport the patient to MSK for the autopsy procedure.

The patient’s family or estate remains responsible for the cost of the funeral and all other expenses related to burial.

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Will the Last Wish Program keep my remains after the research autopsy procedure?

No. The remains will be returned to the patient’s family or estate following the research donation procedure. The LWP is not a whole-body donation program.

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Will donating tissue to the Last Wish Program prevent a funeral viewing?

No. Our standard of care during research autopsy procedures is that regardless of the restrictions chosen, which will be discussed with you at the time of consent, there will be no visible markings that would prevent a funeral viewing.

We typically do not collect samples from the face or extremities. If such specific collections are considered, this will be discussed in detail with you at the time of consent.

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What is the difference between a research autopsy through the Last Wish Program and a clinical autopsy at Memorial Sloan Kettering Cancer Center?

Clinical autopsies performed by the Clinical Autopsy Service of the Pathology Department at MSK are not the same as research autopsies performed by the LWP.

The aim of clinical autopsies is to determine the cause(s) of death, and the findings are detailed in a medical report. The LWP is legally considered an anatomical gift program. The aim of LWP research autopsies is to collect tissue samples for research, and therefore a report will not be issued. Patients can consent to their own anatomical gift (for LWP, the consent must be obtained prior to death), but they cannot consent to their own clinical autopsy (consent will need to be obtained after death from a legal authorized representative).

Clinical autopsies may be done in combination with an LWP research autopsy procedure. In such instances, the LWP will coordinate with the Clinical Autopsy Service. However, LWP is not involved in the unique and separate clinical autopsy consent. Family members interested in a clinical autopsy should contact the clinical care team for more information.

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Who performs the research autopsy?

The research autopsy procedure is performed by an experienced LWP pathologist with assistance from mortuary staff, LWP staff, and support from collaborating research teams, as appropriate.

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How quickly after passing does the research autopsy need to take place?

The LWP aims to perform the research autopsy within 24 hours of death. Cases in which the postmortem interval is longer than 24 hours will be decided upon a case-by-case basis. Of note, long postmortem intervals do not degrade the quality of samples and should not be a determining factor in rushing time needed with your family after death. It is our priority to accommodate the family’s needs during this difficult time and the LWP staff will do our best to honor consented patients’ wishes during this time.

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