Ravin­dra Ma­haraj

Even in death, Nel­son Man­dela con­tin­ues to im­part wis­dom to us. Many who ad­mired the man as an an­ti-apartheid free­dom fight­er and rec­on­cil­ia­to­ry vi­sion­ary al­so fol­lowed his health chal­lenges in his last days, and the fam­i­ly dis­putes that sur­round­ed him in his fi­nal mo­ments, as un­re­solved end-of-life is­sues sur­faced and spilled over in­to the pub­lic sphere.

Ac­cord­ing to in­ter­na­tion­al me­dia re­ports, at one point doc­tors be­lieved Man­dela to be in a "per­ma­nent veg­e­ta­tive state" and there­fore rec­om­mend­ed his life sup­port ma­chines should be turned off. Lat­er, how­ev­er, he was re­port­ed to be "crit­i­cal but sta­ble." All the while, there were re­ports of con­flict with­in Man­dela's fam­i­ly con­cern­ing treat­ment op­tions, es­tate dis­pos­al and bur­ial site se­lec­tion for South Africa's first black pres­i­dent.

The fact is that as pa­tients face their own mor­tal­i­ty, it can be dif­fi­cult for them and their fam­i­lies to make even seem­ing­ly sim­ple de­ci­sions. Re­search has shown that physi­cians tend to over­es­ti­mate prog­nos­tic time­lines. Pa­tients are some­times of­fered ex­pen­sive, in­va­sive and time con­sum­ing treat­ments, at times to lit­tle avail. Un­der­go­ing ma­jor in­ter­ven­tions like surgery or chemother­a­py can pro­vide ben­e­fit to an in­di­vid­ual but there are al­so in­stances where such pro­ce­dures may re­duce length or qual­i­ty of life.

Pal­lia­tive care med­i­cine has evolved to ad­dress this dif­fi­cul­ty. If some­one is di­ag­nosed with a se­ri­ous or life-threat­en­ing ill­ness, pal­lia­tive care can be in­volved at any point in the course of the dis­ease. The goal is to max­imise qual­i­ty of life for what­ev­er time is left.

Pal­lia­tive care pro­vides com­pre­hen­sive med­ical, so­cial, psy­cho­log­i­cal and spir­i­tu­al sup­port for peo­ple with ter­mi­nal or se­ri­ous ill­ness. The unit of care is not just the af­fect­ed in­di­vid­ual but in­volves the sup­port net­work of the fam­i­ly as well.

Many de­tails of Man­dela's con­di­tion were not made pub­lic, which is ac­cept­able, as his doc­tor-pa­tient con­fi­den­tial­i­ty was be­ing main­tained. Still, there is much we can learn from his sit­u­a­tion and ap­ply to our own lives, es­pe­cial­ly if we have a loved one who is se­ri­ous­ly or ter­mi­nal­ly un­well.

Here are five things we should all know about pal­lia­tive care:

�2 Know your loved one's pref­er­ences. It can be hard to make de­ci­sions for some­one when they are too ill to com­mu­ni­cate. Talk to your ill loved one to de­cide what is most im­por­tant to them. Talk­ing about death can be tough but not know­ing what that per­son wish­es can add stress and con­flict to the fam­i­ly dy­nam­ic. Most peo­ple, when asked, pre­fer to be at home sur­round­ed by loved ones when faced with end of life rather than be­ing in a hos­pi­tal on ma­chines un­able to com­mu­ni­cate with their fam­i­lies.

�2 Ask your physi­cian lots of ques­tions. Most good physi­cians are hap­py to re­ceive, re­search and an­swer ques­tions. Ask about treat­ment op­tions. And don't be afraid to ask what would hap­pen if you de­cid­ed not to re­ceive a par­tic­u­lar treat­ment. Be bal­anced: try to ask about both the risks and the ben­e­fits of any­thing a med­ical team can of­fer.

�2 Build a good sup­port group. It can be fam­i­ly, friends and sup­port from your re­li­gious or­gan­i­sa­tion. When faced with an out­come of a short­ened life, one must re­mem­ber that it is a chal­lenge that one should not face alone. It is al­so a good time to del­e­gate ex­tra re­spon­si­bil­i­ties and dis­pose of ex­cess emo­tion­al bag­gage.

�2 Talk about death. Re­mem­ber, talk­ing about death will not make it hap­pen soon­er. Many fam­i­lies are afraid to talk about end of life with a rel­a­tive be­cause they are afraid their loved one will "give up" and die soon­er. Some fam­i­lies try to block in­for­ma­tion from the dy­ing pa­tient. The physi­cian's first du­ty is to the pa­tient so if the pa­tient wants to know, the physi­cian is eth­i­cal­ly ob­lig­at­ed to an­swer hon­est­ly. This is a good thing. Plan­ning for death is use­ful be­cause it can help en­sure that one's end of life wish­es are fol­lowed and in­ter­ven­tions that are not de­sired are avoid­ed.

�2 Em­brace un­cer­tain­ty. None of us knows when we will die. Most pal­lia­tive prac­ti­tion­ers talk about prog­no­sis in ranges of time. Al­though there are cer­tain clin­i­cal clues that give a physi­cian an idea about how much time some­one has left to live, these are es­ti­mates and the physi­cian can be proven wrong. Pre­dic­tions of time left are gen­er­al­ly more ac­cu­rate the clos­er the per­son is to death.

No one likes to talk about death. But talk­ing about it with your loved ones can give in­sight that can re­duce stress and con­flict. We have con­trol about near­ly every as­pect of our lives. Shouldn't we plan for our fi­nal mo­ments as well?

�2 Ravin­dra P Ma­haraj (MBBS, MSc, MR­CP, Amer­i­can Board cer­ti­fied in in­ter­nal med­i­cine, geri­atrics, hos­pice and pal­lia­tive med­i­cine) is a lec­tur­er in the De­part­ment of Clin­i­cal Med­ical Sci­ences, Uni­ver­si­ty of The West In­dies, St Au­gus­tine cam­pus.