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]