from Journal of Pain Symptom Management 2007;33:661-675

quote:

Metastatic Cancer Patients Rarely Express a Desire for Hastened Death

NEW YORK (Reuters Health) Jul 09 - A desire for hastened death is uncommon among patients with metastatic cancer, despite considerable levels of pain and emotional distress, according to findings published in the June issue of the Journal of Pain and Symptom Management.

"The desire for hastened death has been associated with depression, hopelessness, physical suffering, low social support, poor spiritual well being, and low self-esteem in a number of studies of patients at the end of life," Dr. Gary Rodin, of University Health Network, Toronto, Ontario, Canada, and colleagues write. "However, the longitudinal trajectory of this phenomenon is not known, nor is it clear to what extent the desire for hastened death in such patients is a manifestation not only of suffering and demoralization but also of proximity to death."

To clarify this point, the researchers assessed the prevalence of a desire for hastened death and its correlates in a cohort of 326 ambulatory patients with metastatic gastrointestinal or lung cancer who were expected to live at least 6 months.

Of the group, 207 (63.5%) were younger than 65 years of age (median 61.9 years), 111 (34%) were within 6 months of their diagnosis, and 201 (61.7%) were receiving chemotherapy at the time of study participation. They completed a package of self-report questionnaires to measure pain, depression, hopelessness, social support, function, chronic illness, self-esteem, spiritual well-being, and attitudes toward hastened death.

Overall, 166 patients (50.9%) reported pain. Of these, 28 (16.9%) rated their pain intensity as moderate to severe. Participants reported an average of 6.9 physical symptoms. Seventy-six subjects (23.3%) reported elevated levels of depression and 75 subjects (23%) reported elevated levels of hopelessness. Only five patients (1.5%) reported a strong desire for hastened death.

The desire for hastened death was positively correlated with hopelessness, depression, and physical distress, and negatively correlated with physical functioning, spiritual well-being, social support, and self-esteem. No association was found with treatment or proximity to death.

"The will to live tends to be preserved in cancer patients prior to the end of life, in spite of significant emotional and physical suffering," Dr. Rodin's team concludes. "Further, identifying the desire for hastened death when it first occurs may lead to opportunities for therapeutic intervention."

Robins desire to die is all consuming.He does not want to live one more day and talks about it all the time.Every day he wakes up is like another slap in the face and he withdraws further and further into himself.He sits in his chair and waits and the thought that the hospice may send him home only to come back later paralyses him with anger and fear.His attitude seems to be this is where i am lets get it over with.I am totally unable to help him with this,for the simple reason that do not know how i would feel in his position and mostly because deep in my heart i dont blame him for feeling the way he does.

Cookey I doubt my post here will comfort you, but feel I want to add to this topic. Now that I have just been through this with my 90 year mother I begin to understand more of the death process. My mother died two weeks ago after I nursed her in my home. I was with her and was able to call my sister and husband in time for them all to come into her room in the last 10 minutes.

For the previous 6 weeks she wanted 'it ' as she called death to be over with. She thought it was 'it' in March when she was first rushed to hospital and over 13 weeks she just day by day declined. In her sleep she would cry out 'hurry up' or 'get on with it' she knew her time had come and tried to tell me but of course I wanted her to live on and would have waited on her day and night for however long it took. All along I tried to chivvy her along and it was very emotionally draining trying to tempt her to eat and knowing her nutrition was so poor and I could see her fading away. She refused all supplements and only ever ate tiny portions of already dainty amounts. In retrospect I can see she knew the end was near and even though I felt it too I could not admit it to myself that it was so close. In her case she was moderately active until early this winter and by that I mean still lived alone, climbed high steep stairs and did her own chores albeiet all at a much slower pace. She enjoyed life, but was slowing down and looking back we think now she may have been declining for a year or more.

<<Robins desire to die is all consuming.He does not want to live one more day and talks about it all the time.Every day he wakes up is like another slap in the face and he withdraws further and further into himself.He sits in his chair and waits and the thought that the hospice may send him home only to come back later paralyses him with anger and fear.His attitude seems to be this is where i am lets get it over with.>>

My mother was much like this. 2 weeks before dying I noticed she was communicating so much less. I was surprised (and it confirmed my fears of her slipping away) when 6 days before she would not get in the wheelchair to come into our lounge a few yards away to share a birthday tea for my husband whom she adored. She had 3 bouts in hospital and I promised her and myself that if she came out that last time she need not go back ever again and could be at home if that is what she preferred. repeatedly she told doctors she did not wish to go to hospital ever again. This was her choice to be in a family environment. She did not want to go into hospital so why make people's last moments so sterile. I grant you lifting an immobile person is very difficult. But if there are 2 of you or a nurse calling once a day it can be done.

My main regret is that I did not admit to myself and to her that she was declining earlier. Since her death I have read a few articles about the actual process of dying and I wish I had read them before. The day before her death the district nurse told me all the signs were there - mottled hands, minimal urine output, cyanosis fingernails etc - the body shutting down. Despite being worldy I realise now how protected from seeing real death as opposed to drama on film when a head falls neatly to one side that we all are. Like birth I see now that death is a struggle as the body and spirit slowly shuts down and gives itself up. I suggest some may benefit from reading this article which highlight things such as death rattle etc., and the need to admit that death is happening. I never really understood what that was until I saw it and I regret that I had not read the article before my mum passed.

http://palliative.info/mpcna/module4.pdf

Cookey I have just seen your other posts about Robin and I just hope you can get through this. None of us are ever prepared for this.

This message has been edited. Last edited by: PaulineT,

Try also www.cancercare.org.uk "How someone dies"

Dear Pauline, I have tried 3 times to write a wee note to you, & lost it each time before completion! Just wanted to say Im so sorry you lost your dear Mum.It was good she was able to die at home with Family nearby. You gave her her wish & this will give you comfort in the future. Thinking of you, Fran.

This is my second attempt to respond to this thought provoking post and this time I shall try to keep it short(ish).

Facing our mortality is never going to be easy and depends very much on what we believe or do not believe happens after death. We are all inherently spiritual but many spend their lives denying that part of their being until at last faced with death their own or those they love. The fear of the unknown, the fear of leaving folk who depend upon us, the fear of intolerable pain and suffering all come into play and effect the way we will face death. We all must die it is simply a question of when and how.

I understand Rob's desire that his suffering is not extended a second longer than now, I cannot judge his thinking or condemn him for it is right for Rob! What we may need when our time comes is for our partners, family and friends neither to patronise nor to judge but simply give comfort and understand the fear or lack of fear at the end of our mortal life for some like me believe death is not the end but a doorway, and some are ready and content to pass through when they know their lives have arrived at its close - should they be in a position like Pauline's Mum and Rob to see it coming.

Hastening death I cannot countenance even if it is a mere few hours, but if death follows treatment to mitigate distress but is not the primary purpose of the treatment then I am comfortable with that and prepared to allow physicians the discretion to judge the balance.

There is something sadly selfish in those who place the responsibility for the timing of their own death on their partners or families shoulders, because those folk love and try to avoid the end at all costs and yes; there is something selfish in that too.

Only our physicians into whose care all of us: patients, family and friends place our trust can be relied upon to be the final channel of our peace. Alan

Thanks folks. Sorry to have hijacked your topic Vinod.
Grief - I realise this is a time job. I should know that, but the longing for one departed can be overpowering and strike when least expected. What it has done is make me understand the dying process much more. It's just hard. It's also overshadowed my 5 years since surgery in July 2002. I simply forget to be happy about surviving to that anniversary as I was mourning.

Pauline,

I am so sorry that you lost your Mum. It is incredibly hard to loose your mother, I think it's because your mother is your first love, and that love runs incredibly deeply.

We are all thinking of you

Jenni

HI Pauline,

Thought I would say that last Sunday(22nd)was the 31st anniversary of my Mum's passing, it was very sudden and wholly unexpected and at 64 far too young even then. My sister emailed me on the day to say that the anniversary still makes her morbid and brings upon her an intense sense of loneliness. I can't say that I feel the morbidity after all these years but I still share the same sense of loss when the event is recalled. We move on, the grief subsides but who can replace a mother for advice and the precious gift to provide consolation???????? Alan

The desire to die is not enough.Robs unshakeable inner need to live is still out weighing his disintegrating body and the need for a quick release god help him.

I'm so very sad Liz to read that Rob's life is in the balance. I pray you can cope during this struggle.

Thank you Jenni and Alan for your thoughts. I feel a bit better than when I first posted. One factor Alan is that my father died 50 years ago and I was a child and I did grieve, but privately then not in front of anyone.

Children were not encouraged to have feelings about parental loss 50 years ago. This has made everything resurface and of course that connection with him has died with my mother. My sister says she has felt this too. But my mother would not want me to not get on with life so I am busying myself with my work and website.

This message has been edited. Last edited by: PaulineT,

HI Pauline,

I understand what you say about childhood bereavement in the late fifties our Society was different and women did not even go to the grave then; let alone understand the concept of a child's grief. That was very young to lose a parent it is bad enough to cope with mature as you know, but how could you have made sense of your Dad's death if you were essentially "invisible" to all and sundry. However you are healing slowly but surely you will be OK and like Cookey (Liz) the sharing of your experiences educate the rest of us and enable us to avoid making the same mistakes in the future with our own families. Alan

When "No Treatment" is the Choice

82-year-old Irene Stark refused conventional treatment after she was diagnosed with cancer last year, opting instead for hospice care. The decision was difficult for her family and her doctor, she says. ABC television tells the story on its web site here.