EXPLORING FIVE WISHES AND END-OF-LIFE CARE PLANNING IN YOUNG ADULTS

Abstract Introduction. Advance care planning (ACP) allows individuals to plan ahead and express their preferences for medical treatment and care options to health care providers, family, and loved ones before they are no longer able to make or voice decisions due to the event of a serious illness or injury. Advance directives (ADs) allow individuals to record their preferences. While unintentional injuries are the leading cause of death among young adults, limited studies focus on ACP, ADs, and end-of-life treatment and care. Our study aims to (1) examine the perspectives of young adults towards Five Wishes, and (2) measure their preferences related to personal, emotional, spiritual, and medical values in end-of-life care planning. Methods. Data were collected using Five Wishes and a one-time questionnaire. Participants include graduate students (n=30) at a New York State university. The average age was 24 years old (60% were female, 60% White, and 27% Black). Results. In the case of permanent and severe brain damage without expectation to wake up or recover, 63% do not want life-support treatment. In the event of coma without expectation to wake up or recover, 53% do not want life-support treatment. When close to death, 80% want to have religious or spiritual readings and well-loved - poems read aloud. Conclusions. Young adults are capable of making their decisions regarding appointing a health care proxy and giving specific instructions for personal, emotional, spiritual, and medical care. The present findings intend to make contributions in promoting population-based healthcare decision-making, education, and awareness.


Introduction
Advance care planning (ACP) is an important preparation period that allows individuals to express their medical wishes and treatment and care options to health care providers, family, and/or loved ones in advance of a life-threatening or debilitating illness or injury, and death.Preparing advance directives (ADs) encourages individuals to have difficult conversations about their end-of-life care and life-sustaining treatment and care options and document their preferences in writing.Five Wishes is a comprehensive, user-friendly advance directive that addresses personal, emotional, and spiritual concerns in addition to medical and legal measures.In the United States, many people delay and avoid ACP; therefore, completion rates of ADs remain low at about 18-36%. 1,2revious studies related to Five Wishes have primarily focused on older adults/and or younger adults with terminal illnesses such as cancer, heart failure, lung disease, AIDS, and HIV [3][4][5][6][7] and their end-of-life care preferences 6.For example, Wiener et al studied adolescents' and young adults' thoughts and wishes regarding ACP documentation and end-of-life care with life-threatening illnesses.Their results indicated (N = 20) 95% of participants found that ADs like Five Wishes would be "helpful" or "very helpful" for themselves, 90% indicated that the document would be helpful to others, and no participants found talking about the issues in Five Wishes "stressful" or "very stressful". 6The majority of their participants were more interested in how they wanted to be treated and remembered than items concerning medical decision-making. 6Wickersham and colleagues 5 compared the implementation performance of 2 ADs, Oklahoma Advance Directive and Five Wishes.Their results suggested (n = 2748) that Five Wishes was more readable, understandable, appealing, and usable; captured patients' preferences for end-of-life care more effectively; and easily aided patient-clinician conversations. 5hese studies emphasized the importance of ACP and ADs as they related to patients' preferences and perspectives on Five Wishes, and their willingness to initiate difficult conversations and their wishes for end-of-life care planning.However, fewer studies have explored healthy young adults' perspectives on and preference for Five Wishes.
While unintentional injuries are the leading cause of death among young adults, 8 limited studies draw attention to healthy young adults and their perspectives and preferences related to ACP, ADs, and end-of-life treatment and care options.Robinson and colleagues 9 explored young adults' end-of-life wishes based on their previous experiences with death.Their results indicate that a majority of young adults (n = 80) chose a parent or other family member as their health care agent; 25% expressed concern about placing the burden on their health care agent and felt their ADs would ease that burden. 9Freytag and associates 10 explored young adults' willingness to engage in ACP based on intergenerational perceptions of family members' relationships, beliefs, and behaviors.Their results found parents and children had significant relationships, were open about death, death anxiety, and knowledge of surrogate decision making. 10ften times, ACP is categorized only for older adults or for individuals with life-threatening illness or injury.However, a growing body of literature suggests young healthy adults are willing to discuss and engage in ACP as they also suffer from unexpected medical emergencies that may limit their abilities to make difficult medical decisions. 11Sanders et al 11 examined college students' reactions to completing their ACP and sharing their plans with friends and family.These results indicated that students felt a lot of emotions and found the experience to be valuable and that it facilitated difficult conversations with family and friends about end-of-life care that may not have occurred otherwise. 11hese studies have contributed significantly to the growing literature related to healthy young adults' perspectives on and preference for Five Wishes and end-of-life care planning.Our study aims to (1) examine the perspectives of young adults towards Five Wishes, and (2) measure their preferences related to personal, emotional, spiritual, and medical choices in endof-life care planning.

Methods
The objective of this study is to better understand the perspectives of young adults towards Five Wishes, and their preferences related to personal, emotional, spiritual, and medical choices in end-of-life care planning.
Study design.A cross-sectional study.The Institutional Review Board at the University approved the research protocol.
Setting.The study was conducted at a university in New York State in April 2021.
Participants (n = 30).Graduate students enrolled in the 2021 spring semester were invited to participate in the voluntary study.These students were enrolled in the university's Doctorate of Public Health, Master's of Public Health, or Master's of Social Welfare programs.If they were interested in participating, they were given an informed consent form to review and an opportunity to ask questions.If students agreed to take part in the study, they were asked to sign and submit the informed consent before taking the survey.
Data collection.Data were collected through a structured questionnaire survey and Five Wishes that took approximately 45-60 minutes to complete.Data collected included young adults' demographics, their perspective of ADs, and their preferences related to personal, emotional, spiritual, and medical choices in end-of-life care planning.
Study procedure.Students were invited to participate in the study and were given an informed consent form to review and sign prior to taking the survey.The Principal Investigator (PI) of the study (faculty) was not present when the survey was administered and collected.Two graduate research assistants explained the scope and the aims of the research study to the students and invited the students to voluntary participate in the study.If the students were interested in participating in the study, they were given an informed consent form to review and also given an opportunity to ask any questions.If the students agreed to take part in the study, they signed and submitted the informed consent form before taking the survey.Students were informed that their participation status is independent of their course grades and all responses were deidentified.
Study variables.Demographics included age (in years), gender (male, female, non-binary), and race (White, Black, Hispanic, and Asian).The survey questions of young adults' perspectives were binary (Yes or No).Preferences for lifesustaining treatment were obtained by aggregating responses to the Five Wishes form.Five Wishes captured participants' preferences regarding 5 dimensions of future treatment and care options for health care providers and proxies, including personal, emotional, spiritual, and medical values in end-oflife care planning.The Wishes are: (1) My Wish for The Person I Want to Make Care Decisions for Me When I Can't (binary and qualitative), (2) My Wish For The Kind of Medical Treatment I Want or Don't Want (categorical and qualitative), (3) My Wish For How Comfortable I Want to Be (My Wish For What I Want My Loved Ones To Know (binary and qualitative), (4) My Wish For How I Want People to Treat Me (categorical and qualitative), and (5) My Wish For What I Want My Loved Ones To Know (categorical and qualitative).
Data analysis.Descriptive statistics were performed to describe the characteristics of study participants, measures perception related to ADs and preferences related to personal, emotional, spiritual, and medical values in end-of-life care planning.These data were computed using Microsoft Excel software Version 16.49; 2021.

Results
The participants' average age was 24 (range 20-34), 60% percent were female, 30% male, 7% non-binary, and 3% were gender non-conforming.Two-thirds (60%) of the participants were white, and 27% were Black/African American.Table 1 presents young adults' perspectives on ADs and Five Wishes.The study results show that 73% of our participants believe at their current stage of life it is important to prepare an AD.The majority (87%) were comfortable discussing death and end-of-life care in general, and 63% were comfortable discussing their own death and end-of-life care.Most (87%) prefer to make their own end-of-life care decisions.
Wish 1: My Wish for The Person I Want to Make Care Decisions for Me When I Can't.The results indicate 100% of participants want their care agent to be able to (1) make choices about care or services (medicine, diagnostic tests, lifesustaining treatment, surgery, or to stop treatment that has been started); (2) authorize or refuse to authorize any medication or procedure needed to help with pain; and (3) apply for Medicare, Medicaid, or other programs or insurance benefits and have access to any personal files needed to fill out the forms.The majority, (93-96%) give their care agent permission to consent to placement in a nursing home, hospital, or other care facilities as well as move them out of state to find the care they need.Fewer participants (86%) want their care agent to be able to request, take away, or not give medical treatments, including artificially-provided food and water, and any other life-sustaining treatments.Few participants listed changes, additions, or limitations on their care health agent's powers; their responses include: "Must prioritize pain relief if the prognosis is grim.""Long-term medical treatments such as opioid care and drugs for mental health should be subject to several health care professional opinions (at least two) periodically (at least every six months).""Treatments to be kept alive can only be revoked if extensive testing shows brain death," "No limitations.""Any type of severe end stage cancer, dementia or Alzheimer's, any significantly immobilizing" "In the case of brain death-separate from brain damage, in which there is no chance of recovery, the decision of life-support treatment should be given to my health care agent.I would also request my body be kept alive for family, friends, and others to say goodbye if they so wish, for a period of time" "In the condition that I am paralyzed I do not want life support treatment." Wish 3: My Wish For How Comfortable I Want to Be.All participants (100%) want to be helped if they show signs of depression, nausea, shortness of breath, or hallucinations; they want their lips and mouth kept moist to stop dryness; they want to have warm baths often and to be kept clean at all times including their clothing and bed linens; and they want to know about options for hospice care for themselves and their loved ones, including medical, emotional, and spiritual care.The majority (93%) of participants do not want to be in pain and they want to be given pain medications, even if it makes them sleep or drowsy.Fewer participants (80%) want to have religious or spiritual readings and well-loved poems read aloud while they are near death, 13% do not want this at all, while less than 1% want poems read but not religious readings.76% of participants want to be massaged with warm oils as often as they can be while 23% do not want to be.
Wish 4: My Wish For How I Want People to Treat Me.All participants (100%) agreed with the following 4 items indicating how they want to be treated: (1) someone with them especially when death is imminent; (2) to be cared for with kindness and not sadness; (3) pictures of loved ones near their bed; and (4) to die at home.The majority of participants (97%) agreed that they want prayers when possible and music until the time of death and 86% of participants would desire that a member of their faith community be told about their illness.
Wish 5: My Wish For What I Want My Loved Ones To Know.The study results show that all participants (100%) want the following wishes: (1) to have my family and friends know that I love them; (2) to think about what I was like before I became seriously ill; and (3) to respect my wishes even if they don't agree with me.Almost all participants (96.7%) want others to know that they forgive them for any hurt they may have done to them and 93.3% wish to be forgiven for the times they have hurt others.The majority (86%) of participants wish their family and friends knew that they do not fear death and that it's a new beginning.The majority of the participants (90%) wish for all family members to make peace with each other before death.

Discussion
Wish 1. Young adults are capable of and willing to appoint a proxy (ies) and give specific instruction for future treatment and care options.The document provides a clear indication that young adults can name proxies and trust them to carry out their wishes for end-of-life treatment and care as stated in the advance directive.This advance directive also gives proxies the authority to make decisions on their behalf such as moving from 1 state to another, moving from home to an assisted living facility, or to a nursing home.In addition, the young adults in this study were able to give additional specific instruction to guide their proxies such as prioritizing pain relief if the prognosis is grim, revoking treatment to sustain life only if extensive testing shows brain death, etc.This shows young adults are competent and forward-thinking in anticipating their future health care needs.Wish 2. Young adults are capable of making decisions about medical treatment and care options.The results indicate that young adults have a depth of insight as relates to life and death treatment decision-making.This is evidenced in dire situations such as coma and severe brain damage.The majority of young adults do not want life-support treatment, and if it has started, they want it stopped; if in a coma and not expected to wake up or recover (53%) or diagnosed with permanent and severe brain damage and not expected to recover (63%).When in a coma or permanent brain damage state without the hope of recovery, the young adults are decisive in ending life support; whereas when "close to death," the majority (53%) are more open to life support treatment if their doctors believe it could help them, but they want life support treatment stopped if it is not helping their health condition or symptoms.Young adults preferences discriminate between a chance to recover and no chance of recovery.If they have the chance to recover, they want maximum life-support treatment; if not, they don't want to linger, and they opt for the termination of life-support treatment.This approach shows that young adults are practical and oriented to the reality of life and death care options.
Wishes 3, 4, and 5. Young adults are capable of expressing their personal, spiritual, and emotional wishes.Most advance directives do not include decisions related to personal, spiritual, and emotional wishes.The results of this study show young adults are able to make decisions about their personal, spiritual, and emotional preferences to prepare for future care.

Personal Preferences
The majority of young adults want comfort measures related to health including pain relief and treatments for depression, shortness of breath, etc.; comfort measures related to personal care including warm baths, personal hygiene, etc.; and comfort measures related to spirituality including religious or spiritual readings.Comfort measures are important to young adults as they prepare their advance directives, so that their proxies, caregivers, and family members do not need to second guess their personal care preferences.

Emotional Preferences for Needs and Support
The majority of young adults want emotional support.This support includes someone by their side when death is imminent, someone holding their hand and talking to them even if they don't respond, someone praying for them, and all (100%) want to die at home, if possible, just to name a few.

Spiritual Needs and Preferences
The majority of young adults indicated spiritual needs and preferences.All want family and friends to know that they love them, want to be remembered as they were before illness, and for their wishes to be respected by family, friends, and caregivers even if they don't agree with them.At the end of life, young adults want support and positivity surrounding them.They recognized the importance of including these components in their advance directives.

Limitations
Our study had few limitations.First, our study population is small.We were unable to stratify group differences by age, gender, or race.Second, our study population is well educated.The majority of our participants are graduate students or doctorate students in the discipline of public health and social welfare.Acute and long-term health care are critical to public health and social welfare education, management, and policy; consequently, students enrolled in this specific class may be more familiar with ACP concepts and perceptions than students not enrolled in this class.As graduate students studying public health, our study participants have more exposure to topics related to epidemiology, mortality, leading causes of death, and acute and long-term care, thus were more comfortable and willing to discuss end-of-life care issues and topics.The study results will only be pertinent to young adults with similar level of education.Lastly, this study is vulnerable to personal bias when survey questions were being formulated.We have to trust that the participants read all instructions on the survey questionnaire and Five Wishes and filled them out accurately.

Conclusion
This study is a timely contribution to the literature regarding end-of-life planning, which thus far has mainly focused on older adults or young adults with a chronic illness.Even though unintentional injuries are the leading cause of death among young adults, 8 AD completion rates remain low, especially for healthy young adults. 1,2We find that young adults want to make their own health care decisions in the event of an unexpected end-of-life situation, and they are ready to do so in their current stage of life.Young adults are capable of expressing their personal, spiritual, and emotional wishes and were able to document their preferences.Young adults are capable of making decisions about medical treatment and care options and their end-of-life care treatments preferences.Lastly, Young adults are capable of and willing to appoint a proxy (ies) and give specific instruction for future treatment and care options.Participants showed they could think beyond the document, and can list additions or changes to specify their preferences further if they wish to do so.The present findings intend to make contributions in promoting population-based healthcare decision-making, education, and awareness.

Table 2
presents the results of Wish 2, My Wish For The Kind of Medical Treatment I Want or Don't Want.Our study findings show that 53% of participants Close to Death want to have life-support treatment if their doctor believes it could help, but want it stopped if it is not helping their health conditions or symptoms; 53% of participants In A Coma And

Table 1 .
One-Time Structured Survey Questionnaire.PerspectivesAt your current stage of life, do you believe it is important to prepare an advance directive for yourself?
*Missing Value.Not Expected To Wake Up or Recover do not want life-support treatment, and if it has started, they want it stopped; and 63% of participants if they have Permanent and Severe Brain Damage And Not Expected To Recover do not want lifesupport treatment, and if it has started, they want it stopped.Findings also show that In Another Condition Under Which I Do Not Wish to Be Kept Alive 36% of participants believed the following conditions, costs, and burdens of life-support treatment are too much and not worth the benefits:"End-stage condition.If I am not going to be the same person as before, and unrecognizable (personality wise) then do not continue life-support treatment.""If stage 4 cancer I don't want to receive any more treatment if there is no sign of recovery"

Table 2 .
Wish 2: My Wish For the Kind of Medical Treatment I Want Or Don't Want.(n = 30).Here is the kind of medical treatment that I want in the 4 situations listed below: I want my Health Care Agent, my family, my doctors and other health care providers, my friends, and all others to know these directions.