Ensuring Communication in Hospice by Oncology Study (ECHO)

There are four parts of the study. First, the participant will receive phone calls twice a
week from the oncology team to check in with how the transition to hospice is going. Second,
the participant may choose to have an appointment with the Massachusetts General Hospital
oncology team to discuss any questions or concerns regarding cancer care or the transition
to hospice. Third, each week of hospice care, the participant will be asked to complete a
set of questionnaires at a time that is convenient for them either by phone or by email.
These questions will ask the participant about their recent thoughts and feelings about
their experience with hospice and as a caregiver. The questions will take less than 15
minutes to answer. Fourth, after hospice care has ended, the participant will be called by
the oncology team to again check in and about a month later, the participant will also be
contacted by phone to complete a set of questionnaires, again asking about their thoughts
and feelings about your experience with hospice and as a caregiver.

For all of the questionnaires, the participant may skip any questions that the participant
prefers not to answer. The responses will remain confidential and will be available only to
study staff members who are trained in confidentiality and research ethics.

Additionally, during the research study, the investigators will obtain information from the
participant's loved one's Massachusetts General Hospital electronic medical record that is
relevant to the participation in the study for up to 6 months. If he/she has visited another
hospital during this time, the investigator will also ask the participant for their
permission to obtain the medical records from this visit.

The participant will not receive any compensation for this study.

Inclusion Criteria:

- Adult Patient Criteria

-->18years of age) with a diagnosis of an incurable malignancy of the head and neck,
gynecological oncology, sarcoma, or melanoma

- Receiving oncology care at the MGH Cancer Center

- Referral to home hospice services in previous five business days.

- Family Caregiver Eligibility Criteria:

- Designated adult family/informal caregiver for an eligible patient who will
provide the primary home care for the patient receiving hospice services

- Ability to read and respond to questions in English or with the assistance of a
translator

- Access to telephone and/or computer to communicate with the oncology team and
complete questionnaires

- Willingness to complete weekly questionnaires via telephone or email.

Exclusion Criteria:

- Patient Exclusion Criteria:

-- Referral to hospice services away from home (eg in nursing home or in an inpatient
or residential setting)

- Family Caregiver Exclusion Criteria --Person is not the primary caregiver for the
patient