Of life and death.

Think back to your first memory of death.

Was it a loved one? A stranger? A pet? Were you sad, happy, or just curious?

My grandmother, nani, died unexpectedly. During the wake, my cousins and I played together in the bedroom where we had been restricted. All through that memory, there’s a strange, dark, terrible sound.

It’s the sound of my mother, keening. I want to never hear that sound again.

Several years later, my grandfather died, surrounded by family and friends. One of his many granddaughters, a physician, pronounced him dead.

His death was a celebration. The clan gathered. There was a feast. A tent was erected for all the visitors who came to pay respects. Someone said, ‘Such luck. He will climb up to heaven on a silver ladder.’

Now lets think about your death.

How do you want to die? Slowly, so that you have time to say your goodbyes, or quickly, so that you never see it coming? In a hospital, at home, or wherever you happen to be at that moment? Do you want someone with you? Do you want to be alone? What are you afraid of?

More than half the people in this country die in a hospital.

The pager beeps at 1 am. I’m a spanking new psychiatry intern on night-float call for medicine.  ‘Could you please come and pronounce the patient?’

The nurse looks up from her desk and shakes her head at me as I walk into the room.  The patient is an old woman, small and gray. I put my stethoscope over her chest and wait for a full 90 seconds. I check the pupils, the corneal reflexes. Rub the chest. I write the time of death down on a piece of paper. There is no one else in the room. I say a quick prayer before leaving.

Five years later, I sit with a man who has cancer spreading through his bones. ‘I’m done. This is not the life I wanted.’

The family are aghast. They pull out pictures of grandchildren. ‘What do you MEAN palliative care? He could live for months!’

Yes. But he is going to die.

Palliative care does not condemn people to death. Life does.

Palliative care and medical interventions are not mutually exclusive.

What does palliative care do?

It tries to improve the dying person’s quality of life. It provides treatment for pain. It provides treatment for breathing difficulties, for physical discomfort. It does not exclude any treatment that would acutely help the patient, including antibiotics, medicines for appetite and anxiety, even chemotherapy.

It supports the person and the family through denial, anger, grief. It may continue to support them for up to a year after the patient has passed away. The goal of palliative care is to engage the person and the family in making the most of these last moments, days, weeks, months. Not to cure, but to restore.

Hospice is just one mode of palliative care. If a person wants to die at home, palliative care can provide hospice-at-home. Patients can qualify for hospice if their life expectancy is less than six months. They can qualify for palliative care, or be helped by a palliative team, much before that.

An NEJM study showed that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared, but they also lived nearly three months longer. *

What can you do?

Talk about death and palliative care. Talk to your family and friends. Talk about their death and yours. (A death costume is not required, but use one if you must.) Make a plan.

Die as you would live, with choices.

*http://www.nejm.org/doi/full/10.1056/NEJMoa1000678

Advertisements

About purplesque

Psychiatrist, cook, bookworm, photographer. Not necessarily in that order.
This entry was posted in Psychiatry. Bookmark the permalink.

17 Responses to Of life and death.

  1. rlbates says:

    Beautifully said.

  2. Thank you for writing this. After watching my parents age rather badly, I’ve been thinking about how I want to grow old and die. A tiny part of me, the part that ironically is afraid of aging and death, thinks I’d rather end my own life while I still had my wits about me than end up like my mother. Another part of me, the strong part, wants to see my children progress into middle age and wants to accept whatever old age and death bring in the end. I just don’t want to become the burden my parents have become for their children—riddled with chronic illnesses, refusing help but expecting to be helped anyway (on their terms!), angry that the world has changed and refusing to accommodate it.

    No matter how my life ends, I want to have a clear mind with no regrets. I’d rather not die a violent, sudden death, but I don’t want to linger for months or years in a nursing home. Now that you have my attention however, I think I should get my living will form filled out and signed. I’m just days away from being eligible for an AARP membership!

  3. shaily jain says:

    amazing writing….

  4. Lakshmi says:

    Sigh. What do you do in India?
    Watching loved ones age is the worst pain in the world. Is there a palliative care to numb THAT pain?

    • purplesque says:

      Lakshmi..let me just put it this way.

      If I could live in the US and die in India, I would.

      As for watching loved ones age and become more frail and dependent…I wish I could say something to make it better. There just isn’t.

  5. Peggikaye says:

    “What can you do?

    Talk about death and palliative care. Talk to your family and friends. Talk about their death and yours. (A death costume is not required, but use one if you must.) Make a plan.

    Die as you would live, with choices.”

    Beautifully said, and so important.

  6. jaklumen says:

    I had to look up what “keening” meant. It is not part of death that I am aware of in Western culture, well, not anymore, anyways. I believe wakes are quite uncommon to rare for many of us.

    My parents have a living will, thankfully. My father has been ill for many years. He is improving quite well, although for a time my youngest sister and I were discussing and making peace with the possibility we might have to bury him, as he was that sick at the time.

    I do not fully understand what palliative care is. We have just done what we can. I remember my paternal grandparents’ deaths. I was there to help. Cimmy was there to help when my grandmother died, but they already had a special understanding between them when we courted (Grandma A was the first family member I introduced Cimmy to).

    None of that was easy, but now it is my maternal grandparents’ turn. Grandma L is fighting things tooth and tail, although Grandpa J is willing to make some changes. But Grandma L is rapidly losing her memory of most everything.

    It is especially hard because not only my father is sick, but my mother is, too. She is going through treatment for Parkinson’s.

    Okay, that’s enough. I can explain more privately.

    • purplesque says:

      I’m so sorry, Jak. It really sounds like you’re doing all the right things, though. Its always easier when the family members are all on the same page.

  7. YES! Fantastic post!
    Palliative care has been the best thing for FIL – he is getting far better care, the type of care a person with no hope of recovery requires.
    I agree – we should all discuss our “dying wishes” sooner rather than later. I tell my children my wants and needs for “dying” as I make decisions or even have some thought. we are all going to die, I think it is wise to try and make it the way you want it as much as you can…

    • purplesque says:

      Thank you, FD!

      That’s so good to hear! Despite talking about/referring to palliative care, I have no first hand experience to speak of. Its wonderful when families who’ve been involved in palliative care themselves speak about it, because only they can appreciate the difference it has made for them.

  8. Aussie Emjay says:

    Death is one of those subjects most of us do not like to talk about – almost as though speaking of it will somehow bring about a quicker demise than one wishes. I did a living will when I was having internal surgery – I didn’t really want to because I really did think it might be tempting fate to do away with me (silly I know) but then when I thought about what my existence might be like if my wishes are not known I completed it. Ideally, I’d like to go to sleep one night and not wake up the next morning.

    • purplesque says:

      It does feel a bit scary, doesn’t it? Whenever A and talk about death (we talk about it a lot- which is a bit morbid), we always end up holding hands. Its the fear of the unknown, I imagine, that makes it hard to talk about.

      Your reason is the number one reason most people make their living will. I think that’s the best way to ensure you don’t end up in a situation you wouldn’t want yourself to end up in.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s