End of Life Care Advocate Never Talked With Her Own Dad About His Wishes

Unlike many of the other health disparities that impact the African-American community, this is one over which we have some control.

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Brandi Alexander
July 16, 2014, 1:05 a.m.
Brandi Alexander is the regional campaign and outreach manager for Compassion & Choices, the nation's leading, non-profit end-of-life choice advocacy organization. (Courtesy photo) Courtesy photo

The day my fath­er died from pro­state can­cer — Jan 11, 2011 — is the day I de­cided that no fam­ily should ever ex­per­i­ence the same pain. That day everything changed for me. I had worked for sev­en years at an or­gan­iz­a­tion whose sole fo­cus is end-of-life care, yet I had not had even one con­ver­sa­tion with my fath­er about his end-of-life wishes. It was truly a wake-up call, an eye-open­ing ex­per­i­ence I hope I nev­er have to re­peat.

Ima­gine sit­ting in a hos­pit­al room with your un­re­spons­ive fath­er, your five sib­lings on one side of the bed, and his new wife and her five chil­dren on the oth­er side. It was like a stare-down ses­sion be­fore a big com­pet­it­ive match. People on both sides thought they were best equipped to speak on my fath­er’s be­half. The sad real­ity is that none of us — not one of the 11 people in that room — had a clue about what he wanted. He had no ad­vance dir­ect­ive, had nev­er had a ser­i­ous con­ver­sa­tion about his end-of-life wishes, not even with me: an end-of-life care ad­voc­ate.

Since that fate­ful day three-and-a-half years ago, I have learned that hor­rible situ­ations at the end of life are far too com­mon in this coun­try, es­pe­cially among people of col­or, and the Afric­an-Amer­ic­an com­munity in par­tic­u­lar. In fact, ac­cord­ing to the 2002 In­sti­tute of Medi­cine Re­port, “Un­equal Treat­ment: Con­front­ing Ra­cial and Eth­nic Dis­par­it­ies in Health Care,” Afric­an Amer­ic­ans are ”dy­ing from treat­able and pre­vent­able ill­nesses with more fre­quency than oth­er eth­nic groups. The re­search in­dic­ates that ra­cial and eth­nic minor­it­ies are less likely to re­ceive even routine med­ic­al pro­ced­ures and ex­per­i­ence a lower qual­ity of health ser­vices,” even when in­sured. Ex­perts also say this dis­par­ity means pa­tients are more likely to dis­trust ter­min­al and oth­er­wise grim dia­gnoses, en­dure un­wanted med­ic­al treat­ments, and ex­per­i­ence un­ne­ces­sary pain and fam­ily strife.

Un­like many of the oth­er dis­par­it­ies that im­pact the Afric­an-Amer­ic­an com­munity, this is one we have more con­trol over. It starts with hav­ing a con­ver­sa­tion. Only 50 per­cent of Afric­an Amer­ic­ans have talked with fam­ily mem­bers about their wishes for end-of-life care, and 20 per­cent have not talked to any­one about this in­ev­it­able is­sue, ac­cord­ing to re­search con­duc­ted in 2003 by the Duke Di­vin­ity School and the Na­tion­al Hos­pice and Pal­li­at­ive Care Or­gan­iz­a­tion (NHPCO).

Afric­an Amer­ic­ans and oth­er minor­it­ies un­der­use pal­li­at­ive and hos­pice care even when they have ac­cess to it. Afric­an Amer­ic­ans, for ex­ample, make up about 13 per­cent of the pop­u­la­tion and rep­res­ent only eight per­cent of pa­tients who par­ti­cip­ate in hos­pice care. At the same time, white Amer­ic­ans make up about 78 per­cent of the total pop­u­la­tion and 83 per­cent of hos­pice care pa­tients, ac­cord­ing to NHPCO.

Edu­ca­tion about avail­able re­sources is a must. Far too of­ten, people as­so­ci­ate hos­pice with “giv­ing up” and “the place one goes to die.” That is just not the case; hos­pice ac­tu­ally fosters good end-of-life care, and the earli­er the pa­tient ac­cesses these ser­vices, the bet­ter off he or she is. For ex­ample, pa­tients with non-small-cell lung can­cer who re­ceived pal­li­at­ive care lived nearly three months longer on av­er­age than those who did not re­ceive pal­li­at­ive care, ac­cord­ing to a 2010 study pub­lished in The New Eng­land Journ­al of Medi­cine. Pal­li­at­ive and hos­pice care are one of the best ways to en­sure a good death, whatever that may mean to each in­di­vidu­al.

People of col­or have a long his­tory of poor ac­cess to health­care and lower qual­ity health­care in this coun­try. There­fore, it’s not sur­pris­ing that stud­ies pub­lished in the Journ­al of Clin­ic­al Eth­ics in 1993, the Journ­al of Amer­ic­an Geri­at­ric So­ci­ety in 1999, Journ­al of Transcul­tur­al Nurs­ing in 2000 and Journ­al of Health & Aging in 2000 all con­cluded that more Afric­an-Amer­ic­an pa­tients and phys­i­cians fa­vor ag­gress­ive life-pro­long­ing treat­ment in the face of ter­min­al ill­ness than their white peers.

The med­ic­al com­munity could in­crease the re­cept­ive­ness of people of col­or to en­ga­ging in end-of-life dis­cus­sions just by chan­ging the nature of the con­ver­sa­tion. In­quir­ing about all of the treat­ment op­tions pa­tients want — wheth­er they are life-sus­tain­ing or not — is a good way to start the con­ver­sa­tion. That would en­gender great­er levels of trust in health­care pro­viders than a con­ver­sa­tion framed around when and how to dis­con­tin­ue care or turn off life-sus­tain­ing equip­ment.

Afric­an Amer­ic­ans’ end-of-life choices are also in­flu­enced by shared cul­tur­al be­liefs in the role of fam­ily and oth­ers in de­cision-mak­ing, and the im­port­ance of spir­itu­al­ity. As the New Liv­ing Trans­la­tion of the Bible (Pro­verbs 27:12) says, “A prudent per­son fore­sees danger and takes pre­cau­tions. The sim­pleton goes blindly on and suf­fers the con­sequences.”

Be­ing pre­pared is not dis­respect­ful to one’s re­li­gious faith and per­son­al be­liefs. It does not af­fect the abil­ity to be cured or to be blessed with a mir­acle, if that’s what one be­lieves. For ex­ample, Rev. Madis­on Shockley, an Afric­an-Amer­ic­an United Church of Christ pas­tor and vo­cal sup­port­er of Com­pas­sion & Choices, re­cently dis­cussed los­ing his fath­er in a blog post: “The mo­ment of death is a sac­red mo­ment, and it’s of­ten pain­ful emo­tion­ally, phys­ic­ally and spir­itu­ally. But when it can be right, it’s a real bless­ing to every­one. A per­son can be faith­ful and also wel­come death.”

These are com­plex is­sues, ones with which Amer­ic­ans do not wrestle alone. On Sunday, one of the world’s pree­m­in­ent re­li­gious lead­ers, the re­tired Arch­bish­op Des­mond Tutu, re­versed his pub­lic po­s­i­tion on end-of-life care and de­cision-mak­ing. In one of Bri­tain’s largest news­pa­pers, The [Lon­don] Ob­serv­er, he an­nounced his sup­port for a Brit­ish bill modeled after Ore­gon’s Death With Dig­nity Act. It would al­low ter­min­ally ill, men­tally com­pet­ent adults with a pro­gnos­is of less than six months to live to re­quest a doc­tor’s pre­scrip­tion that they could self-ad­min­is­ter to end their dy­ing pro­cess if their suf­fer­ing be­comes un­bear­able. Tutu de­scribed him­self as an ad­voc­ate of dig­nity for the liv­ing and the dy­ing.

At the end of life, Afric­an Amer­ic­ans are no dif­fer­ent than any­one else in this coun­try. We die too. We also want autonomy, choice and peace­ful life end­ings. We must step up as a com­munity and start think­ing and talk­ing about end-of-life de­cisions, be­cause without it we suf­fer.

Death is in­ev­it­able, so wheth­er you want every treat­ment op­tion avail­able or none at all, it’s im­per­at­ive to make sure it is clear to those who mat­ter and to pick a health­care proxy that you know will en­sure that your end-of-life wishes are honored. Any­one can start this pro­cess by call­ing Com­pas­sion & Choices’ toll-free end-of-life con­sulta­tion ser­vice, 800.247.7421, and vis­it­ing our web­site, www.Com­pas­sion­AndChoices.org, where one can ac­cess state-spe­cif­ic ad­vance dir­ect­ives and the Good-to-Go Tool Kit, all free of charge.

The most lov­ing thing you can do is to make your wishes known to your loved ones, of­fi­cially in writ­ing as well as through can­did dis­cus­sions. Un­for­tu­nately, be­cause our fam­ily failed to take these steps, we watched my fath­er die a hor­rible and pain­ful death.

If I had the foresight to dis­cuss my fath­er’s choices with him, we could have spent his last days hon­or­ing his life in­stead of fight­ing over his death.

Brandi Al­ex­an­der is the re­gion­al cam­paign & out­reach man­ager for Com­pas­sion & Choices, the na­tion’s lead­ing, non-profit end-of-life choice ad­vocacy or­gan­iz­a­tion.

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