Inspiration and Spirituality

Palliative Care – A Reflective Essay

Published

January 25, 2013

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By Maryam Sultan

Yellow is my favorite color. It’s the color of the purse my sister gifted me on the day that I completed my memorization of the Holy Qur’an. It’s the color of flowers that my husband makes sure to include in every bouquet he brings home. It’s the color of the gold in the earrings my grandmother gave me when I was 10 years old. It’s the color that my living room is painted every morning at sunrise. Yellow is also the color of my patient. Her face looked like she had been painted for a middle-school play about fruit when I walked into her room the day that we met. The day that we met was also the day that she died.

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I had never before been in the presence of someone so close to death, and I found myself terrified. I was frightened for my patient, who seemed to be fighting against her fate. Pain was apparent on her face. Her breathing was loud, uneven and ragged. I found myself recalling the Qur’anic verse: “When the souls reach the throats”, signifying that that is their route of exit from our bodies during death. I wondered if that’s where her soul was at that moment. I felt a tightness in my own throat, and reminded myself that my tightness was very different from hers.

I was frightened for the beautiful family gathered around their mother, grandmother, and great-great-grandmother, all of whom lay limp in one bed. Would they wail and make her passing more painful? How many photos of this once-smiling matriarch, similar to the one that stood on the windowsill of a hospital room, also existed on windowsills, walls, and dressers throughout their homes? Will they tear up each time they pass by these images mourning her death, or will they continue to celebrate her life?

I was frightened for myself. The second Qur’anic verse that I recalled upon stepping into this hospital room says that “every soul is a taster of death”. The Arabic of this verse is notable in that the word for “taster”, due to its spelling, requires that the reciter take 6 full seconds to say the 5-letter word. This always causes reciters and listeners to pause and reflect on the fact imparted by the verse. I have recited this one verse probably close to 100 times in my life so far, but it was only on the day that I met this very special patient that I realized something about it: Every translation of the Qur’an that I have read translates this verse as “every soul will taste death”, but that’s not what it’s saying at all. The verse puts this “tasting” of death in the present continuous tense—we are all dying. This patient and I are not very different at all; she was just getting a larger dose of death than I was at the moment.

I wonder what, ultimately, my moment of death will be like. Will I be in an overly-sterile, unfamiliar room? Will my family be gathered around me calmly awaiting my passing? Will a recitation of the Qur’an be playing in the background? Will my favorite color be plastered onto my face like a gruesome prank? I pray that it won’t be. I pray for comfort, peace, and acceptance for myself, my family, and my patients at the times of our passing.

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12 Comments

Sheryf jannah focus

January 25, 2013 at 12:07 PM

Indeed “remember often the destroyrt of pleasures”

May Allah make us of those who reflect and work towards meeting Allaah..as believers..til jannah. Ameeen

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Yasmin

January 25, 2013 at 1:30 PM

Jazakallah khair for this beautiful reminder!

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Mohamed

January 26, 2013 at 1:11 PM

Beautiful reflections MashAllah! JazakyAllahu Khairan :)

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Omari

January 26, 2013 at 4:27 PM

Thank you for explaining the verse; baraka Allahu feekum wa jazakamu Allahu khairan katheeran fil daryan.

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elusive

January 27, 2013 at 7:22 AM

May Allah never take our soul unless He forgive us.

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Pingback: Palliative Care – A Reflective Essay – MuslimMatters.org « painpolicy
Farhan Yusufzai

January 28, 2013 at 12:40 PM

bismillah,

My father is currently on Palliative Care because his lung cancer has spread all over his body. He’s on powerful pain killers (dilaudid), eats the equivalent of a cup of apple sauce every two days and drinks so little he has to get an IV once a week from dehydration.

Despite having zero appetite he STILL wants to smoke. At this point it could not possibly cause more damage so we begrudgingly oblige as a bargaining chip to get him to drink water or eat food (this is no small thing, I hate smoking so much that I once told a family-friend to “get off our property” during an Iftaar party because he offered Abu a cigarette in Ramadan after he hadn’t smoked in some two weeks) The entire ordeal means preparation time, literally lighting the cigarette for him (subhan Allah), and afterwards putting him on his nebulizer and oxygen. I hate it.

The physical weakness and pain are there. He can barely walk and is in a lot of pain from the cancer. While the pain is manageable from the drugs, the worst part for the family is that the dehydration has caused hallucinations. He’ll talk to people who aren’t there, move his hands as if he’s typing or doing something, say incoherent things, be unable to express his thoughts, etc. He has also gotten irrationally angry. For example, he’ll ask to go to a room, then get upset why we’re taking him there. Yesterday I was told to leave the house and “go to hell” after I kept bugging him to drink water. Other unpleasantries have been uttered in public to family members. But I know he’s not in his senses right now, so we try not to take it to heart.

My mom does so much work for him and is so patient, its amazing. Once when he couldn’t talk we asked him who she was and he wrote “My Love”. Ma sha Allah :-)

Our family was debating on the issue of a DNR, 2 were for it, 2 were against it, 1 undecided. When he eventually mentally came back, he categorically rejected artificial life support (ie, agreed to a DNR). People, get a DNR decision made before it gets to this point!! That was an intense moment. But the doctors pretty much told us there’s no cure and ‘go home and die’ in a more diplomatic way, but essentially that.

People coming over has been a double-edged sword. Close family friends bring food, do chores, spend time with us, provide emotional support, etc. When things get serious (ie, he can’t breathe), they’ll hover around. They’re well-intended, but get in the way. Unless you know the family very well, I’d suggest people visit the ill for 10 minutes, max. Others make it just another social gathering and end up spending hours talking about irrelevant things. I know their intentions are good, but I dislike it when people say “you’ll be better in no time!”

I was going to get him marijuana brownies to eat to up his appetite and stop the constant vomiting and dizziness, but was told by everyone not to because its illegal and would be arrested. My parents were supposed to get Marinol but never did. In retrospect I wish I had just gotten the medicine myself, but that time has passed. Stupid laws.

I was directed by my mom to arrange the Funeral Home, Janazah and Cemetery preparations. I suggest Muslim communities have a hotline to call and have someone take care of this coordination for them. Such a service would be nice. Maybe I could start that…?

Family drama plays a role. While most tension is masked in times of need, its still present and I still have to play the little games whose rules were enshrined before I was born. Most of the time when India or Pakistan call (not sure how they got my cell phone…?), I just ignore the calls because I just don’t want to be a pawn. Don’t like me ignoring your calls? Perhaps you should have established a relationship with me earlier.

Of course Allah knows best, but we all know he’s going to die soon. It has certainly affected my views on life. There’s a bit of “pulling the rug from under your feet” going on here. I did/do go through periods of confusion about what’s the point of doing anything if we’re just going to die? Why work? Why build and invest? I haven’t had too much time to think about all this. It certainly has made death a more tangible reality to me, not just an intellectual concept. Alhumdu lillah, I have a Shaykh who is guiding me through the emotions and helping me stay grounded.

Also, knowing that someone is dying isn’t “sad”, its “heavy”. Maybe the actual death will be painful and sad, but right now its heavy.

I never bought into the whole Qur’an-on-tape thing, so we’ll recite for him. Its funny, he sometimes corrects me in Surah Yaseen, that I’m reading FOR him! Ha!

There’s my brain dump. Make du’a for us and all those who are ill. Sorry if I sound angry, I’m not, just venting to the Internet.

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- mustafa
  
  January 29, 2013 at 3:10 PM
  
  Assalamualaikum wa rahmatullahi wa barakatuh
  
  May Allah have mercy on you and your family and cause your father to leave this world without a sin.
  
  Reply
- Muslima
  
  February 6, 2013 at 2:38 PM
  
  May Allah (swt) make it easy for you and your family and give all of you lots of sabr and ajr.
  
  Reply
- Zahra1
  
  February 15, 2013 at 5:21 PM
  
  As salaamu 3lykum brother,
  
  May Allaah azza wa jal grant you and your family members greater emaan from this a’meen ya rabb. I don’t think that you were venting at all but you seemed very honest and actually many of your sentiments are sentiments that I and I am sure many of my members are feeling. Firstly, before I talk more about myself I pray Allaah azza wa jal expiate his sins and grant him the reward of paradise for enduring all this pain and suffering (as well as you all ameen ya rabb). My father suffers from complex and vascular dementia he has just turned 60 years old. It is excruciating firstly for him foremost and for us watching him decline. Just in a week he has been rushed to hospital twice and placed in the rescucitation (sp) room. My once rosy father is just withering away and I must admit it is the most toughest test I have had to endure. However, there is hikmah behind every hardship that Muslims have to undergo.
  
  I simply now take lesson when will it be my time, I have watched my own and my father’s 30 years fly by like the blink of the eye. Anything can occur anytime.
  
  Your father, you and your family will be in my prayers.
  
  Reply
Anees Ahmed

January 29, 2013 at 1:51 PM

I found this peace especially touching/moving being a doctor myself (not yet working though). Similar thoughts or at least those of how fragile and fleeting life is and how I might deal with or face my last days, hours, moments often come to mind. I’ve seen my own father suffer in his last months when I was only 19, as well as patients that I encountered during my education in medicine.

Lovely piece.

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Maryam

January 31, 2013 at 8:50 PM

Asalam alaikum,
Jazaak Allahu khairan for sharing this with us. May every discomfort that your father endures be a means of purification for him, and may your patience and service weigh heavily on your scales. Be sure to continue speaking with people who are helpful to you about your situation; this time in illness is often hardest on the caretakers. May Allah grant you and your family peace, ameen!

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