Pulmonary Embolism

[cannulator]

I wonder if I may ask for some input from experienced Hospice Nurses...

I am a chemo nurse in an outpt university infusion center, and as a result, see many people who become Hospice pts at a point when their oncology treatment has not succeeded.

Of course, this is a dreadful time for the pt and family, and I have heard many pts fearfully ask how their death might come. I suppose there are alot of answers to this question, including vague, non-commital responses. But, often, they are told by their docs/np's that there will be no pain - that they will most likely just fall alseep and not wake up. To me, this is, in itself a scarey thought. But it often gives the pt alot of comfort, namely, that their death will likely be peaceful.

On more than one occasion, however, the pt does not experience a peaceful passing. It seems fairly common for the pt to experience a distressing death due to pulmonary embolism, especially with certain diseases (colon and partuclarly pancreatic Cancer). The family is never prepared for the panic that accompanies the suddeness of such an event, and is ill-equipped to handle the emotion that ensues - all made worse by their guilt at having not been able to do more for their family member.

I guess my question to you is: do you prepare the pt and family members for the possibilty of a difficult passing? How do you make them aware of that possibilty without scaring them? Do you, as Hospice nurses, instruct families how to ease pain and breathing difficulties if you are not present to help out? Is it common for pts to ask you how they will die - and do you ever tell them that they will pass peacefully? I think they may cling to this thought, so is it perhaps more important for them to believe this, even if it is not true?

Thanks for any advice on this difficult subject....

[leslie :-D]

pe's are not a common event.

typically the pts are medicated, so should anything 'adverse' occur, it is much more uneventful.

we can most times anticipate undesirable events and plan accordingly.

of course there will always be pts whose symptoms are much more challenging to contain.

but for the most part, they eventually lose consciousness and then die.

so yes, it is comparable to dying in one's sleep.

i would never tell a pt that i expect their death to be horrible.

never.

conversely, i let them know we will make them as comfortable as humanly possible.

there's really a lot more to dying than controlling the physical symptoms.

it is a multi-faceted process and frankly, i'm way too tired to expound on this now, lol.

if i've overlooked anything in your post, i will certainly reread it and get back to you.

with peace,

leslie

[Allow Mystery]

Dear cannulator,

A very thoughtful post, thank you. earle 58, as ususal, has provided you with an excellent reply, she is an experienced and wise resource on this Hospice forum.

Your questions, most approriate, is what Hospice is all about! We advise the patient and families that we are there to make them comfortable and will do whatever it takes to assure their comfort.

We prepare the patient and families with assistance (Hospice Aide), equipment, medication, support and training (Skilled Nurse,Chaplain, Social Worker) to address the challenges that may be forthcoming, but we don't harp on the potential problems/difficulties. It has been my experience that patients do not ask how they will die, I'm sure this crosses many minds, but by providing support and reassurance that we will be there to handle any challenges, we ease those fears. It has been my experience, that when Hospice is given the time (too often

oncologist hang on to the patients much too long, when curative treatment is not available, and waiting until the symptoms are out of control to refer to Hospice) that most patients will have a comfortable,

peaceful death ("as humanly possible"). Thanks again!

[cannulator]

Thanks for your replies.

I am sorry if I implied that telling a pt he/she would die a "horrible death" would ever be appropriate..no,no,no! But to prepare them for an event that may not pass as expected.....just was wondering, that's all.

I do agree that PE's are out of the ordinary, but we have seen an increase in them in the past couple of years. As more data comes on out on some of the newer agents we use in oncology, especially the VEGF agents which have been linked to increase strokes, MI's, and arterial-vascular events - and which have a very long half-life and can cause these hematoligic symptoms for up to 6 months after they were delivered, I feel that PE's are more common than in the past. Our GI -onc states that 60% of pancreatic cancer pts actually die of PE.

It does seem like we are keeping pts on chemo much longer than we used to - I wonder if you feel, as a group, that Cancer pts are arriving into hospice care in much more dire conditions, with less time to transition into the care you all provide. Our treatment options expand daily, it seems, and we see interesting combinations of off-label drug use in the hopes that it may very temporarily stave off the inevitable. Perhaps with a harder fall for the pt, in the end.....almost like a clinical trial without the oversite.

I have been in this field on and off, for over 2 decades,and am obviously feeling a bit unsure about my place in it right now.

Thank you for the important work all Hospice nurses do - I think in the end, it is probably the most important care ever provided to pts.

[leslie :-D]

Thanks for your replies.

I am sorry if I implied that telling a pt he/she would die a "horrible death" would ever be appropriate..no,no,no! But to prepare them for an event that may not pass as expected.....just was wondering, that's all.

I do agree that PE's are out of the ordinary, but we have seen an increase in them in the past couple of years. As more data comes on out on some of the newer agents we use in oncology, especially the VEGF agents which have been linked to increase strokes, MI's, and arterial-vascular events - and which have a very long half-life and can cause these hematoligic symptoms for up to 6 months after they were delivered, I feel that PE's are more common than in the past. Our GI -onc states that 60% of pancreatic cancer pts actually die of PE.

It does seem like we are keeping pts on chemo much longer than we used to - I wonder if you feel, as a group, that Cancer pts are arriving into hospice care in much more dire conditions, with less time to transition into the care you all provide. Our treatment options expand daily, it seems, and we see interesting combinations of off-label drug use in the hopes that it may very temporarily stave off the inevitable. Perhaps with a harder fall for the pt, in the end.....almost like a clinical trial without the oversite.

I have been in this field on and off, for over 2 decades,and am obviously feeling a bit unsure about my place in it right now.

Thank you for the important work all Hospice nurses do - I think in the end, it is probably the most important care ever provided to pts.

cannulator,

i think most of these pts you talk about, are those that are either placed in an inpt hospice facility or if they're home, often end up being hospitalized.

unfortunately, i do deal w/alot of these types and are often referred to hospice too late....where there's only a matter of days left.

i'm sure you see your share of pts who continue receiving chemo/rad, despite a dismal prognosis.

but, the meds these pts receive in hospice, can often blunt the effects of any terminal event.

some are more challenging than others, but in the end, they are sedated and unaware.

just last week i cared for a pt who had been transferred from the hospital to the facility i work at.

he had various blood dycrasias and his heparin had never been dc'd.

now even though the pt was obtunded, i dreaded the family watch this pt bleed out as he died.

i had to try and gently persuade them to leave, as it was only a matter of moments.

they wouldn't leave and so i had to warn them the events they were about to witness.

so yes, even though the pt wasn't aware of what was happening, it was a tragic way to watch someone die.

the main intervention, is to convince the family that the pt didn't feel anything.

i've been in this field long enough to know that if a pt is properly medicated, then 99.9% of the time, the end is uneventful for them.

not always the family however.

please be reassured that death itself, is really a peaceful transition for the pt...even when it doesn't appear to be.

leslie