A few ques­tions be­fore you go

The Monthly (Australia) - - NEWS - Steven Am­s­ter­dam

As med­i­cal ad­vances have ex­tended first-world life spans by decades, dy­ing has be­come less of an acute event and, more of­ten, a slow, man­age­able de­cline. Com­fort mea­sures, no mat­ter how grim the phrase can seem, usu­ally treat the clin­i­cal symp­toms that come with the body’s de­te­ri­o­ra­tion. If un­treat­able suf­fer­ing – phys­i­cal, psy­cho­log­i­cal or spir­i­tual – leads a per­son to wish for a quicker end, that as­sis­tance must come from else­where. For now, such help looks like it must be de­liv­ered by the health care sys­tem, by way of leg­is­la­tion.

Some ques­tions are in or­der.

Are we a so­ci­ety that en­forces pro­longed suf­fer­ing? (See: “You wouldn’t let a dog go on like this.”) Are we a so­ci­ety that will treat the nat­u­ral end of life with a med­i­cated death? (See: “Birth is un­com­fort­able and messy too.”)

Do we even need a law to sanc­tion what has been hap­pen­ing, one way or the other, for cen­turies? (If we want to evolve to a point where doc­tors can pro­vide as­sis­tance with dy­ing with­out risk­ing their li­cences, then yes.)

Haven’t laws that re­spect an in­di­vid­ual’s choice and safe­guard against slip­pery slopes and death pan­els been passed in other places? (Yes, but we still have to write a law that is ap­pro­pri­ate for our health care sys­tem, our le­gal sys­tem and, most im­por­tantly, our so­ci­ety.)

What, ex­actly, would make you want to call it quits? When you need help get­ting to the shower? The toi­let? When you can’t take a deep breath with­out gasp­ing? Would it be in­tol­er­a­ble to have your child of­fer­ing sips of Susta­gen? Or your part­ner of 32 years at­tempt­ing to give you a bed bath, and laugh­ing or cry­ing at the soapy mess? Would you ac­cept a pair of nurses lean­ing over your hos­pi­tal bed, show­ing your best friend how to make sure you have dry con­ti­nence pads? Do you think these will be your lim­its when the time comes or do you think you’ll ac­cept a long good­bye?

What is qual­ity of life? What is dig­nity? How im­por­tant are they to you? How much in­de­pen­dence do you ex­pect at the end of your life?

What if your level of need re­quires you to move to an in­sti­tu­tion? Would that be it? Could you en­dure hav­ing to ask a stranger to feed you?

If de­pen­dence is not the outer limit, what about pain? Is a semi-se­dated state ac­cept­able? What if the pain can usu­ally be con­trolled? How much pain would you ac­cept?

Over what pe­riod of time should you need to ex­press a wish for a has­tened death be­fore you may be al­lowed to make it hap­pen? Weeks? Months? Years? What if you die be­fore your case gets through the sys­tem?

More specif­i­cally, what con­di­tions should qual­ify you for early dis­missal? Pro­gres­sive metastatic can­cer? Mo­tor neu­rone dis­ease?

What about prog­no­sis? What is an ac­cept­able hori­zon that you would be will­ing to skip to avoid fur­ther dis­com­fort? Weeks? Months? Years? Did you know that most

spe­cific med­i­cal prog­noses for ter­mi­nal ill­nesses are wrong? What mar­gin of er­ror do you find ac­cept­able for this? Weeks? Months? Years?

Does the dis­ease have to be clearly ter­mi­nal or merely pro­gres­sive and de­bil­i­tat­ing? What about chronic heart fail­ure? De­pres­sion? Di­a­betes? Paral­y­sis? Psy­chi­atric ill­ness? Out­liv­ing your friends? (Heads up: De­men­tia pre­cludes clear con­sent for as­sisted dy­ing, so the most of­ten feared dis­ease isn’t likely to make the cut.)

Is hav­ing lived a full life rea­son enough?

Have any of your doc­tors ex­plic­itly dis­cussed with you the fact that you will die? Why not? (Ex­tra credit: Go make an Ad­vanced Care Plan with them and dis­cuss it with your loved ones. This is much more likely to af­fect your last min­utes than a vol­un­tary eu­thana­sia law.)

And who gets to pass judge­ment on your ap­pli­ca­tion to die? Your spe­cial­ist? Your gen­eral prac­ti­tioner? What if they dis­agree? How about bring­ing in a so­cial worker to me­di­ate, and as­sess for com­plex fam­ily dy­nam­ics or fi­nan­cial strain? How about a psy­chol­o­gist, to see if there’s a treat­able mood dis­or­der? How about an oc­cu­pa­tional ther­a­pist to ex­plore your po­ten­tial level of func­tion? How about all of them to­gether? Will you be in the room? Will your part­ner? Chil­dren? Friends? Will they all have to ap­prove your re­quest? (Bonus ques­tions: Have you ever tried to sched­ule a mul­ti­dis­ci­plinary meet­ing with your fam­ily? How much time do you have left now?)

How, ex­actly, should your Nem­bu­tal pre­scriber re­fig­ure their un­der­stand­ing of “do no harm”?

In what part of the hos­pi­tal do you think your death should oc­cur? Do you be­lieve as­sisted dy­ing is part of pal­lia­tive care or its op­po­site? What if some staff don’t sup­port it? Should they be re­placed?

Would you pre­fer a morn­ing or af­ter­noon ap­point­ment? Will you take the next avail­able slot?

Or would you pre­fer for your death to hap­pen at home? Who should write that script? Who should dis­pense it? Could you store it safely to be cer­tain that no one else finds it be­fore you need it? What if there is left­over med­i­ca­tion and your be­reaved part­ner finds it?

Who will be called if some­thing goes wrong? A doc­tor? A nurse? Who is cur­rently train­ing new clin­i­cians to as­sist with dy­ing? Would you be OK with them learn­ing on the job?

What if, by the time you gain ap­proval, you can’t take the med­i­ca­tion on your own? Who should ad­min­is­ter it? Your chil­dren? Which one? Would a clin­i­cian be prefer­able? Would you feel more at ease with the as­sis­tance of a ma­chine?

There.

Any ques­tions?

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