Palliative Care Misunderstandings

[Helen]

Laurettas

Thank you so much for posting this and starting this thread.I would like to ask you if it is ok if I reuse this info to share with our friends and family that just don't get it.And I do not mean use everyones reply's just your initial post...Pam and I were shocked by the high percentage rate's of not understanding until we started talking about our families and friends and their understanding of Pam's tx and unfortunate misconception's.


Love and Light

Helen

[Laurettas]

Oh, Helen, feel free to repost it. I just got it from a medical news site that sends me emails occasionally. I was rather surprised to see the doctors' admittance of the limitations of their treatments. I hope that they learn to be more forthright in their explanations to their patients and let them know the things that were discussed in the article. I feel that the patients have the right to the information so that they are then able to make informed decisions.

[Kathryn in MN]

so I'm now following the motto "get busy living, or get busy dying"....I choose living, for however long that is.
Rob

YEAH! And truly we should ALL live by this motto, cancer or no cancer!

And most of the things we know should get done when we hear we are terminal everyone should be doing ANYWAY because we are all terminal from the day we are born... The idea that preparing ourselves or loved ones for our imminent death shouldn't be something we are afraid of or that is taboo to do or speak about. It is smart proactive planning. Accepting our mortality and understanding reality does not in any way have to affect our hope and spirit to stay alive as long as we can.

[Laurettas]

Beautifully said, Kathryn. You expressed perfectly what is in my heart.

[hannahw]

Totally agree with all of you that reality is a good thing and it doesn't mean you have to give up your hope, let alone your life.

But since I know not everyone chooses this path and since I know that different approaches can create conflict within a family, I also want to say, if your approaches differs from members of your family, try to remember that everyone does the best they can. We all have different needs and expectations for this journey and they don't always align with the needs and expectations of our loved ones. Hopefully, we have the patience, compassion and foresight to give one another space and accept that in matters of life and death, we sometimes have crazy responses and we sometimes dig our heels in. And most of the time there's more than one acceptable way to process and cope and proceed. Whether you want to know it all or want to know next to nothing, it's your choice and it's ok. Which isn't to say that I don't hope that people will really consider more information over less information, but at the end of the day, none of us can judge what is right for someone else.

Love isn't always logical so as much as those of us who are logic driven want others to rely on logic, a lot of people rely on emotion, or some combo of the two and all of these methods are really ok. I know, speaking for myself, that even though I'm logic driven, even though we've had all the conversations with my Dad's docs and I've been at peace with things for many years, there's still a little corner of my mind that doesn't want my Dad to die EVER. What can I say, I harbor a little crazy. But somehow, I think that crazy has helped me manage the challenges that have come up during the course of my Dad's treatment. I also know my Dad needs to be free to make his own decisions, free of the burden that would come from possibly thinking he's letting us down if he stops treatment. We love him too much to let him continue when he's ready to be done. We love him enough to let him go. But it's going to suck and I'm sure that everything I've come to believe will be severely tested by the illogical little spot in my brain that wants my Dad to live forever. Sometimes my crazy is like a bridge. Eventually it's probably going to be a hurdle. Guess I'll deal with that when I get there.

[eve]

Do all patients have to fully know and accept?
I have the deepest respect for people who are able to fully grasp and deal with reality,
coming to terms with the knowlede of their own mortality.
In my father's case, the clear, rational, no suger coating way he has been dealing with his stage 4 dx
Is a true wonder to me and one of the most important lessons he will ever teach me.
I hope when my time comes, i have the strength to face end of life with the same humility and courage.

I am just not sure this approach is the single "correct" or "legitimate" way to deal with terminal Illness.
I think for some people fully grasping this agonizing truth means pain or terror that is just too much.
Their defense mechanisms will push this away no matter how clear their Medical team is about their
Situation.
Of course docs must tell their patients the truth, thet have no right to keep information from them,
but what patients subconciously choose to do With this knowledge is their business.
The ultimate goal is not just alleviating unbearable physical pain but unbearable mental pain as well.

I've also come to understand that "knowing" and " not knowing" is not black and white.
People can know at one level while denying at another.
They can do what they need to do and still hope and believe in a miracle.
They sometimes grasp but can not verbaly express.

In judaism there is a very beautiful saying. it goes: "Everything is decided (or "given") but permisiion is granted"
Much love to you all, Eve.

[Laurettas]

Eve, that is a difficult judgment call for sure but I truly believe that if doctors, particularly oncologists who deal with this all the time, were trained well then this could be handled in a manner that would make it possible for most people to come to an acceptance about their situation.

I see so many difficulties when the elephant(death) isn't discussed from simple things like the patient putting off doing things they would like to do because they would do it "next" year to family members suffering decades later because no one ever discussed with them that their mother or father or sibling was going to die and they should prepare and make peace with that.

My husband put off doing several things until next year that he didn't get to do because next year didn't come for him. When he found out he was imminently terminal he still wanted to do all of those things but was no longer physically capable of doing them. And so many of his family were very casual about his situation and I had to push at times to get them to come to see him. I basically insisted that everyone come to his 2012 birthday, which turned out to be his last birthday. His family was all so happy that that event had happened after he died and wanted to know how I KNEW it was going to be his last one. Sigh.

This is going to be a very controversial statement I am anticipating but I think it really needs to be said. When someone is seriously, terminally ill, it is not always only about them. Many people are affected by their illness and death and everyone has the right to have what is best for them taken into account. From children who should have the right to process and talk about and come to accept their parent's mortality, to those who have possibly been estranged from the the patient for whatever reason to the spouse who may have temporal or emotional needs that need to be resolved, death affects many people. I think there ought to be a way to help everyone, including the patient, to come to acceptance of the reality that is death. We need to help people with a terminal diagnosis understand that there is always hope, defined properly, and life can be lived to the full even with the knowledge that their time on earth will be short.

[NWgirl]

Eve, I think you make a good point. Not everyone will choose to accept/face their mortality. I don't think there are any right or wrong ways to go about this - as has been said by others already, we each do the best we can. It's a lot to take in. I do agree that doctors need to present the facts, even if it's not what we want to hear. What we do with that information, is then up to us. I've pretty much been told I'm terminal. Some days I deal with it head on; others I choose to live in denial. I take various approaches depending on the day or sometimes even the hour. And honestly, when I'm in denial or have just been able to put the whole thing out of my head for a few precious moments, it's kind of nice.

I think what is key here is that the doctors absolutely need to be up front and honest with us. From there, we each do the best we can. As Kathryn said, the steps we take to plan for end of life are things everyone should be doing - estate planning, making wills, medical power of attorney's, etc. Everyone should have these things in place - but I know that even when I was young and healthy - and possibly especially when I was young and healthy, it was really hard to address these things (we did though - thank heavens we bought life insurance on me before I ever got sick).

For me, I'm a planner - always have been. So in my situation, I am grateful that I have time to think about what I'd really like to accomplish in the time I have left - however long or short that may be. What do I really want to leave behind for my kids to remember me by? That sort of stuff. And I can work toward those goals. But I know plenty of people - cancer or otherwise, who choose to live in various stages of denial. I think it's important that we accept that each of us deals with these things differently and we all need to practice patience, tolerance and respect of others - and with ourselves.

[janeandrea]

But those kind and compassionate silver haired words do not reveal that he regards your premature death as a natural and perfectly acceptable outcome of his treatment. And five minutes later he will have forgotten all about you. And when the notice of your death appears on his desk he will give it no more than ten seconds thought before moving on to the next patient…..

I haven't finished reading all of the posts on this thread yet, but I wanted to comment on the above statement.

It isn't true. Sure, maybe there are some doctors who are that cold or jaded that the death of a patient does not affect them. But because of my unusual relationship with my oncologist in Chicago, I got to see behind the veil. He was devastated whenever he lost a patient. Hell, he was devastated when a patient's disease progressed! I am sorry that you had a bad experience with your oncologist, but I don't think one should paint them all with the same brush.

And someone mentioned (sorry, I do not remember who) that medical students are not educated in communication. Well, that may have been the case a couple of decades ago, and perhaps even in several med schools still, but before I had to leave because of my cancer, that is actually what I did for a living. I worked for the largest medical school in the country (University of Illinois), and that was pretty much the main thrust of my whole department, teaching communication (we did also teach clinical skills, but even then, those lessons included communication). This is certainly becoming the norm across the country, and for the past several years, med schools can't get accredited without some kind of "Standardized Patient" program, and in order for students to get their license, they have to pass a standardized patient examination as well as their other boards and tests. As it is kinda an unknown thing for those outside of medical education, the definition of Standardized Patient is a person who is trained in portraying a certain illness and trained in feedback and communication skills, who then engages in a clinical scenario with a med student playing the clinician and the SP then either teaches or assesses, whichever is the point of that particular program.

Unfortunately, the med students don't always take that as seriously as their clinical lessons. However, in the 14 years I worked at UIC, I saw that changing.

[hannahw]

With regard to how much a patient death impacts a doctor, it's probably like most things, mileage varies by doctor. I'm sure there are some docs who just pick up and move on without a second thought, but I think for most doctors death of a patient has a deep emotional and psychological impact. Studies show that one of the reasons a doctor may go off the rails with depression is the emotional trauma they experience with patient death.

Patient often report a fear that their doctor will abandon them at end of life. And family often reports that after the death of a loved one they feel a lack of closure with the doctor and staff because there may be no further communications. But it turns out that doctors also report feeling a lack of closure and also confusion. They tend to be unclear on what the boundaries should be. Questions of, should I call, what would I say? are difficult ones. Often, rather than say something unwelcome and/or wrong they say nothing which, apparently, is not good for the family or the doctor.

Studies also show that one of the reasons behind a doctor over-treating a patient, is the development of a type of friendship between them. As the doctor becomes invested in the relationship they may, like family sometimes does, really focus on length of life. They don't want to fail the patient, they want to keep on fighting. And patients sometimes give feedback that supports this inclination that fight makes right. How often do we read stories on this board of people who are outraged at their doctor for suggesting an end to interventional therapy and a transition to palliative care?

At several hospitals near me, oncology and palliative units do some sort of annual life review/celebration where they come together as a staff to remember patients who passed away during that year. It's a very reflective process.

On a personal note, I will say that the first few times we talked to my Dad's oncologist I thought he was an unfeeling jerk. I wanted to metaphorically punch him in his face and then kick him while he was down. But over time, that changed. The thing I worry about now is whether he cares too much. The friendship he has with my Dad can be comforting, but I wonder if it might also be a liability. At the end of the day, he's not paid to be a friend, he's paid to offer objective advise. Then again, medicine is more than a science, it's also an art. So hopefully his subjective findings also benefit the advise/care he provides my Dad.

Anyway, I don't think "cancer can't be cured" really flies considering that some cancers actually are curable right now. But I do think if you take a look at the biochemical pathways involved in cancer (not to mention the body as a whole) it lends some insight into why it's such a cluster f in terms of finding solutions. And I do believe that most doctors, although certainly not all, take the failings of the medicine they can offer very much to heart.