Tuesday, February 17, 2009

Managing Pain

I just saw a show on TV where someone dies of cancer. It was dramatic and painful and horrible. It wasn't at all like what Shin went through.

Shin had a fairly high tolerance for pain. If there were children around, she could not only stomach a lot of pain but put on that beaming smile that would light up the room. But she was also quite practical about pain management. When it came to childbirth she readily asked for an epidural and didn't really understand why one wouldn't. And when it came to cancer pain management she was quick to accept pain releif.

Over the past year, to control pain and coughing/breathing problems Shin was taking codeine and panadol. Morphine was the other option, but it felt like a big move, a terminal move, so she preferred to stay on codeine, which was proving fairly effective. When her abdominal pains increased after Christmas she started taking morphine but she felt horrible and nauseated so she went back to the codeine. A side effect of morphine is nausea, so Shin became reluctant to try morphine again. Michelle and I thought it was more likely that the gall bladder was responsible for the nausea and Michelle was able to convince Shin to try the morphine again. It worked well the second time round.

She started out with a liquid morphine form that she would drink every 4 to 6 hours. She initially took about 25mg per day. We then put on a fentanyl patch which essentially is a band aid like sticker that we put on her stomach/chest/leg or arm. It would last 3 days and give her a steady does equivelent to 25 mg per day. Then when she felt pain or breathing problems we would give her morphine. This was the so called "breakthrough" morphine, for when the pain would breakthrough the patch dosage. When we found we were giving consistent "breakthough" doses we added another patch. And when I say "we" I mean the palliative care team, Michelle and me.

In the final week, the patch was not working so well. Shin's heart beat was racing but her overall pulse was not that strong and her blood pressure was so low the doctors could not get a reading. The circulation needed for the patch to work well was just not strong enough. We decided to switch to a subcutaneous injection form of morphine that was administered through an injection driver. An injection driver was a small devise that would steadily squeeze the syringe at a steady pace thoughout the day . We put 125mg of morphine in the syringe and it would last a day for Shin. When she had breakthrough pain, we could press a button that would give her an extra dose. The needle went under her skin in her stomach and was taped there with a butterfly clip and would stay there all day.

By the final two/three days Shin was sleeping 97% of the time and when she did wake, she seemed uncomfortable so we would boost the morphine and she would sleep again. Sometimes she looked uncomfortable in her sleep, sometimes her breathing was racing and sometimes she had a strained look on her face. When we would see this would boost the morphine and she would calm. By the final day we had increased her daily dose to 150mg per day. I saw her go though a period of racing breathing in her sleep that she would associate with the feeling of suffocation when she was awake. I had to boost the morphine several times in a row with only 10/15 minute breaks in between. Eventually her breathing slowed and then later stopped. I think it is likely that the morphine was responsible for slowing her breathing until it stopped.

I was holding her hand as her breathing stopped. I was telling her everything was going to be ok. She's done a great job, and she can trust me now. The kids are going to be just fine. Go to sleep and rest peacefully.

Shin had decided that her first priority was that she didn't want to the kids to see a pain savaged cancer patient. Her second priority was to get as much quality time with the kids as possible. But when it became clear she could not really spend good time with the kids without the emotion of it triggering a coughing attack, Shin said she was ready if the medication caused permanent sedation. In fact Shin said that she would prefer to end it already (about 4 days before she passed away), and I would have been ready to help her with that if needed. But in the end I think we all felt comfortable with the process. We would not let Shin be in any pain, and if she was we would boost the morphine if to the point where there were risks. A year ago, Shin and I had talked about what we would do if Shin was in an unbearable state. She wanted to have options to end it if it got ugly. We talked about having sleeping pills on hand just in case. But I think if we knew a year ago how the process would be managed, we would have been more comfortable.

I think Shin's overall pain management was done as well as can be. I think she was fortunate not to linger in a sleeping state for weeks. I read in one of the comments that it is probably better to have cancer in a critical organ rather than a prolonged battle with pain in less critical areas. She was at peace with death and didn't need to prolong the final stages. Maybe not everyone can die as peacefully as Shin did, but I'm encouraged that the palliative care help out there can manage things better than I had realized as little as a few months ago.

Tony

26 comments:

Anonymous said...

Tony,

You mentioned about the person who died a horrible and painful death. Just wish to know if this person have gone through the terminal stage without pain relief using drug such as morphine?

Anonymous said...

"I was holding her hand as her breathing stopped. I was telling her everything was going to be ok. She's done a great job, and she can trust me now. The kids are going to be just fine. Go to sleep and rest peacefully."=> This will definitely set her mind in peace. Shin is lucky to have you and Michelle and the pallative professionals. And I think is also Shin and your courage and wisdom to have them to help! Is not easy for you and Shin's love ones to let go even Shin had talked about not prolonging her life. Many cancer patients fear about talking about death, fear about facing death (which are all normal reaction and feeling) or even when they decided not to prolong because of the pain, their love ones may not bear to let go. I really admire the "systematic" and rational process and decision taken by you and Shin...This can be a good lesson to be learn...Though you and Shin,etc, had been through the fears, dilemma,etc, but you all had done very well! :) Tony, are the children by her bed side when her breathing is going to stop or stopped? Did Shin wake up after the kids,etc, say good bye to her?
Another qn is did the doc say whether if Shin(cancer patient) is actually awake when she looked uncomfort or having racing breathing in her sleep?

Can see that Shin still undergo some discomfort and pain but I am glad that she wasn't feeling too much of pain,etc, as compared to many.

Shin really can rest in peace as you are really a good and responsible daddy and husband. :)

Anonymous said...

Thanks so much for sharing. Knowledge is power.

Yvonne said...

Thank you, Tony, for sharing. Take care.

Dawn said...

Shin's Family and Friends: I came to your blog after doing a Google search looking for information on my Uncle who has terminal brain cancer. Not only did I find information, but a warm and touching story of a strong woman. The pictures of the children touched my heart, since all three of my children are adopted from South Korea. Please know that you and your family and friends will be in my thoughts and prayers.

Emily said...

I read somewhere that a sedated patient is still able to feel pain but just can't express it... I really hope this is not true & didn't happen to Shin.

Anonymous said...

Dear Tony,

I've been reading Shin's blog since I saw the TV program on her some months back. Shin is truly a role model and I have learnt so much from her.

A significant thing happened to me as a result of this blog - I now seem to be ok to face dying and death ... I am composed & calm about this, whereas I used to be very very scared about what will happen to me, where will I go, what will become of me ?

Thank you very very much for sharing Shin's last days and for passing on the knowledge of palliative care, it really offers the right perspective instead of the horrific painful and fearful images we are so familiar with.

The most important thing is to live a meaningful life and strive to do our best and help others.

Thank you very much.

Anonymous said...

Shin's finaly days was very similiar to my cousin's....

Tony said...

- "You mentioned about the person who died a horrible and painful death. Just wish to know if this person have gone through the terminal stage without pain relief using drug such as morphine?"

Hi Anon, actually this was just a fictional TV show. Even worse it was Battlestar Gallactica (which I'm embarrased to admit I really like). What I meant to convey was that if I had seen the scene of the person dieing a horrible death with cancer before, I guess I would have thought it was fairly realistic. Maybe some die in a lot of pain like that, but our palliative care doctors were quite emphatic that the pain should be managed and no one should suffer.

Tony

Tony said...

Hi Emily,

Its a fair point, but we were mindful of that. Although in this post I only spoke about morphine, there were really 3 drugs that were in her injection driver - 1) morphine - for pain relief and to help make breathing easier, 2) Midazolam - which helped with anxiety and sleeping and 3) Haloperidal - which helped with the hallucinations.

Theoretically if we had given the midazolam without the morphine, she could have been sedated but in pain (i think). But at the level of morphine we were giving her, pain was not really a problem even when she was awake. The main concern was breathing (which to Shin was a terrible suffocating feeling) and we could see when she her breathing was racing and we would boost the morphine and midazolam which was effective (both when awake and asleep) in making the suffocating gasping ease.

Emily said...

Thanks Tony, i believe you know & did what was best for Shin. She mentioned in her past post that the worst was the suffocation & that was just unbearable to have to gasp for air. I'd like to think that she is in a better place now.

Karin said...

Tony,
It must be incredibly hard writing all of this down. But you are really doing us a great service by sharing what hardly anyone shares, thereby giving us important insight which helps to comfort and give hope.
THANK YOU TONY!

Leighbee said...

You are amazing..I have told you that a few times but I can't believe how many times I have thought it...

Anonymous said...

it is impossible to give an adequate amount of thanks for sharing something so sacred and painfully personal. i know you garnered strength from shin and thought of her purpose with this blog when writing the last few entries.

as someone who is also very methodical, i appreciate reading your account simply to know what is happening on a physical/human level, in a detailed day-to-day account. it's incredibly insightful and helpful tony.

thank you so much.

Anonymous said...

Hi Tony,

I don’t know if it is appropriate to bring this up in Shin’s blog.

My husband was very fit and took care of his body well, always want it toned and all. He exercises at least 3 times a week. He does not smoke nor drink. If anything, he works hard. So the cancer hit us by surprise. He was only 34.

I would like to highlight to the readers the importance of insurance. I guess like all young healthy adults, I did not pay much attention to it. But really health should not be taken for granted. So I would really encourage the readers to take a serious look at their insurance coverage for critical illness and hospitalization plan. People don’t see the importance of it till something hit them.

I think you will readily agree that the medical cost these days are not what we can afford based on income alone. Especially so when one is hit – more income loss yet more expenses to incur.

Evelyn

Anonymous said...

Hmmm, don’t know if I will start an argument in the blog by saying this.

I find some readers asking insensitive questions. Questions like “Are the children by Shin’s side when she passes away?”, “Did Shin say goodbye?” What does the reader want to know? Does it comfort Tony whether or not the children are by the bedside? What is the point that reader is trying to say?

I am just putting myself in Tony’s shoes and personally these are the questions I find people asked to satisfy themselves rather than concern.

Evelyn

SINCITY said...

..thank u soo much Tony for sharing!!

Take good care of yrself and d kids...Josie and Toby..

Anonymous said...

Hi Tony, I came across some information on the dying process which I found very useful and wanted to share it here: http://www.hospicenet.org/html/preparing_for.html

I hope you will find comfort and reassurance that you, and all the people around you who have cared for Shin in her final days, had done all the right things to make sure that Shin was at peace and ready to let go.

I am sure that what you will continue to do from now - for yourself, Josie and Toby, this blog, the cancer cause and everything else that mattered to Shin - will make Shin very proud of you.

Lastly, I would like to wish Josie a very Happy 6th Birthday this Friday :-)

Ida

Anonymous said...

My father died of stomach cancer in 2004,before his death, he was in pain, he was screaming and hitting his chest, and even want to jumped out of the hospital window, if possible, i know he would have do that. the doctors gave him pain killers, morphine to reduce his pain. it doesn't work well. I hope that his pain would somehow go away....he fought and lose the battle, and died peacefully in his sleep. his pain had go away, there was no more pain for him anymore, he died at age of 80.

Tony said...

Hi Evelyn,

Its a very good point about insurance. I think it is worthy of a full post at some point. I thought we were doubly insured through a private plan and through my work plan. They both only covered a fraction of total costs as they both had annual limits that were far below the actual cost of cancer. Quick numbers is that a per year cost was close to $200k while insurance covered $50k. Maybe not all cases will be that expensive since Shin was a good candidate for some of the new cancer drugs that really added to the costs. But your point is right on. Everyone needs good medical insurance and check the plans to make sure the coverage levels are reasonable.

Also, I would say that I really don't mind curious questions about what was happening at the end (for the record, no the kids were not there when she died, in fact we mostly kept the kids out with friends except for a few times like when they said goodbye as in my previous post). I think that I've decided to be open about Shin's last weeks, and hopefully people can think about, prepare and maybe learn. Questions about what was happening don't bother me. I think Shin would have wanted it this way. And I've already heard from a couple of friends about how it already helps. One friend, just flew back to the UK yesterday to be with her father who has been told he should get the help of a palliative care doctor. She emailed me that she is obviously very worried but these posts have helped. That makes it worth it already i guess.

Tony

Tony said...

Ida,

That was an excellent link. I wish i found it a few weeks ago.

I'll see if I can add it to the links section of this blog.

Tony

Anonymous said...

Hi Tony,thanks for all your replies and I really think that Josie and Toby will grow up to be like Shin and you. Because you and Shin are actually "of the same kind" :). Just that we get to know more of Shin.

Maybe we Asians who grow up in "asian style", are more "narrow minded" or more "conservative" which make us "closed" but you and Shin are always ready to answer and see all that as "positive and no a bother" at all. This is what we can learn from you too. :)

Anonymous said...

Hi Tony, I also wish I had come across the link sooner. But I wanted you to know that I shared the link with you for 2 reasons - firstly to give you the reassurance & comfort that you and Shin's caregivers did all the right things and secondly I hope it will benefit other blog readers. The information is very detailed and neutral (not religion biased). The fear of the unknown, not knowing what to expect when the end is near, not knowing what the dying process is like can be quite scary. In the Asian culture especially, many people think it is taboo to talk about cancer, about death and even about making a will. Even cancer patients themselves do not feel comfortable discussing it openly with their friends and relatives (that is why having someone blog about it so openly like Shin did is something very rare). They even find it hard to say the word "Cancer". I had 2 colleagues who died of cancer, and to this day, no one even knows for sure what type of cancer they died of (cos they did not talk about it). People do not know what to say & how to react to a cancer patient, especially one who is terminally ill. It takes a lot of courage to be open about it. When I first came across Shin's blog, I thought it was very courageous of her to have this blog and to be so open about it. I think this blog is great, and I am sure you will do a good job in keeping this blog alive and sharing with us your personal experiences to help other cancer patients and their families. Ida

Anonymous said...

Tony

It is a known medical fact that increasing the morphine level can slow down breathing.So, isn't this an ethical issue about who and what conditions should drugs such as morphine be administered ? Indeed ,as has been shared, increasing the morphine level has risk factors.

Tony said...

Anon,

Ethics. I'm glad you brought it up actually. Its sort of the elephant in the room that i suspect everyone is too polite to mention. I think there are a few levels to the ethics discussion.

1. The palliative care team were very clear in their view that this process was not euthanasia. We are giving her medication in an attempt to relieve her symptoms. I think the same logic would apply to any medical procedure that has the risk of going wrong. It is possible that an operation leads to a patients death, but that was clearly not the intention of the procedure.

2. In Shin's case the morphine was used to both relieve pain and steady her breathing. The breathing part is more clear cut not a grey area ethically. If we do not calm her breathing there are clear risks form the panic making the breathing problems worse, to the heart racing to make up for the lack of oxygen and heart failure (which was already a risk due to some of the chemo regimes she had been on that has a side effect of weakening the heart).

3. And then there is the potential case of using morphine for just pain relief. I suppose one could argue that ethically you should allow pain and suffering instead of increasing morphine when you get to higher levels of morphine (and of course we are dealing with terminally ill patients). Personally, I think this is an unethical decision in itself but I could see how opinions could differ.

4. Then there is the case of clear euthanasia. I essentially said in my post that under certain situations I would have been open to euthanasia. The first conditions would be a) that this was something we were clear about before medication started to affect decision making process (and Shin had made her views slear repeatedly over the past few years) b) that it was a terminal situation, c) the patient was very clear about the decision. I realize there may be legal and religious problems with this view, but to me the ethics of the decision would be such that I couldn't really live my self for letting Shin suffer beyond her wishes, due to personal self interest to avoid legal headaches. And I am not religious.

I am sure there are differing opinions on this, but these are mine.

Tony

Anonymous said...

Tony, I think it should be perfectly ok since is done with Shin's clear intention made and with medical professionals. Though is a debatable issue, I think the priority is still the intention of Shin and yours (not to see her suffer in pain and distress,etc). And I suppose this is different from "brain death and vegetables", so is less debatable.

If I were you and even Shin, most likely I will do that too. Suffer in pain and distress,etc, for cancer patient is clearly different from "brain death or vegetables" because the latters may have "chances" of recovery and they are not in pain,etc(I suppose). Ethical and religions underlying concepts are "right" but I suppose "wisdom" and "exceptional cases or case by case basis" should be taken into consideration.