Table 2 Examples of Patient-Participant Centeredness Considerations for Last Gift Study

EOL Clinical Research Conduct

 • Minimize burden of study participation for terminally ill participants [54]

 • Ensure research remains flexible, taking into consideration fatigue and fluctuating symptoms across disease trajectory [27, 54]

 • Assist participants with completion of study procedures and questionnaires [27]

Quality of Life at the EOL

 • Pay attention to quality of life at the EOL [12]. For example, location of care is an important indicator of quality of EOL care [109].

 • Honor treatment preferences of terminally ill individuals, including pain management and palliative care [110]

 • Respect participants’ privacy and need for time with next-of-kin/loved ones

 • Consider participants’ food preferences and other small attentions

 • Consider how substance use at the EOL affects study participation (e.g. alcohol, cannabis)

Advance Care Planning

 • Assist participants with advance care planning needs [74]

 • Provide proper referral and counseling for participants who desire medical aid to end life under California End of Life Option Act (EOLOA) of 2016

Mental Health, Cultural and Spiritual Issues

 • Provide adequate psychosocial support to study participants. The Last Gift study team has a two psychiatrists and one licensed psychologist on staff.

 • Give consideration to mental health issues of participants, including fear, suicide ideation, depression, among others [28]

 • Pay attention to cultural issues, spiritual well-being and meaning as integral to the dying process [3, 28]

Financial and Legal Issues

 • Pay attention to issues around the burden of cost of dying and health insurance

 • Help ensure participants have support for EOL legal needs [111]