Friday, February 20, 2009

Hospice vs Home-care

When Shin died, Michelle organized for a doctor that Assisi Hospice recommended to come and certify her death. Michelle said he seemed very confused about what was going on. He was mumbling that it very strange for someone to die at home and very strange for someone donate their body to research. In fact, in the days before Shin passed away, Michelle was checking on the various procedures and the police had told her that in the case of a home death that they would have to send to body to forensics for an autopsy - which turned out to be incorrect. We were surprised at how this seemed so unusual here in Singapore.

We were not sure how it would go in the end and Michelle and my mother had already visited several hospices to see which would be the nicest for Shin. Michelle already wrote about how she was really impressed with Assisi. Shin first thoughts were that she didn't want the kids to see her struggling in pain and dying. She expected that going to the hospice would be the right thing.

As it turned out I think we are all thankful that we were able to care for her at home. I don't think many people would be in position to do so, but as it turned out we were. Shin needed 24 hour around the clock care in her last couple of weeks. It just so happened that my employer was thoughtful enough to give me some time, Michelle had not started her program to get her degree for teaching maths yet and Alicia was able to take a couple of weeks off her job. Together, I felt Shin got the most loving care she could have possibly gotten.

Its wasn't easy. It was flat out tiring and we were all sleep deprived. Shin had good moments where she felt good and cheerful. But a lot of the time she was uncomfortable and frustrated that she couldn't communicate well. Due to her weak breathing, she would usually write what she needed to say. I think anyone who is contemplating home care, should anticipate a patient who is increasingly uncomfortable, frustrated and demanding a lot of the time. There were nights when Shin was finally sleeping soundly that Michelle, Alicia and I all had that feeling of relief that we experienced as parents when our newborns were finally asleep.

Being able to be close to family was also important. I have already written about the night when Shin was sleeping peacefully that the children were able to say goodbye to her. Also, Shin's parents, brother and sister came from Korea and the US to see Shin while she was still alert. When she had periods of strength we were all right there to take advantage of those times and in them I think she had some nice moments with her family. I'm not sure you we would be able to have such nice moments if she was in a hospice.

The Assisi doctors and nurses made frequent visits as we needed them. Every few days at first, and up to every day in the last week. We were able to get all the prescriptions for the drugs we needed. I would make frequent trips to the hospital pharmacy to get bottle after bottle of morphine (which is surprisingly inexpensive) and fentynal patches (which are expensive). The hospital pharmacists would stare at me wide-eyed as I would ask for all this morphine. One day Dennis, Alicia's husband went to pick up some more morphine for me. He was up all night working on the memorial slideshow, hadn't shaved and looked rather like a drug addict. He said the pharmacy gave him the third degree, but eventually gave him the drugs.

I don't know what we would have done if Shin had lasted longer. I've heard of some cases where a patient can linger for weeks. At some point Alicia and I would have had to go back to work, Michelle might have had to get back to Australia. We never really ruled out having to go to the hospice, but I think we all felt more comfortable with the way it worked out. I imagine that not many families would have the luxury of time to provide around the clock care for loved one and the hospice is a nice and critical option. But I wouldn't rule out home care even if it is rarely done here in Singapore. I don't think it is that rare in countries like the US and Australia. And I hear of many cases where families rush a dying cancer patient to the hospital to die. I don't really see what the point. There is nothing the hospital can really do, and the racing to and checking into a hospital is not the way for a patient to spend their last days.

And of course it helps that Shin was just one of those people that it was worth it to get every last moment you can to be with her.

Tony

24 comments:

Leighbee said...

What a lovely post Tony, thankyou. Not only was Shin a lovely person worth caring, for but you too are all lovely people worth commendation! I truly believe there are few people who could give as much as you guys did, especially being so closely and emotionally involved too. I watched from afar as you gave yourselves completely with love, care, compassion and educated reasoning and this is something you should all be very proud of. Shin once told me how "lucky" she was. I remember thinking it was a strange thing to say. She explained more to me and I too now have seen with my own eyes that YES she truly WAS lucky...you gave her more in her sadly shortened life time than many of us who reach old age will ever know. THANK YOU xx

Anonymous said...

Tony, I think many of us singaporeans have this impression or thought that if a person died in home, must sent for autopsy because for fear of being "murder". This is what I heard of.So many would rush the dying patient to hospital or don't want them to return home "to die".
But I also saw in the documentary clips in Shin's blog that there is ambulance to send back the patient to home to die in their house but maybe that's the minority. I am glad that you have cleared so many doubts or wrong concepts that we have. Thanks Tony.

Shin is "lucky" to pass away with so many ppl able to take time off to be with her and like you said, if she were to drag further and at the point when most of you wouldn't have the time as you all would wanted to spend with her, I think Shin would suffer.

Is not easy to take care of patient and the frustration of them and the patient themselves are understandable. Imagine if we were the one who suffer in pain,discomfort yet unable to express, the frustration are there and also the frustration the caregivers would have too. So to both, is not easy at all. But overall, for Shin, you, Michelle, Alicia,etc, is what we said "fortunate in the midst of unfortunate". Shin is lucky to have all of you during her last couple of weeks and I am sure despite her frustration and discomfort, she is fortunate to die peacefully as she hope to and to be with all her love ones when she was alert and she able to enjoy those moments.

Take care and happy birthday to Josie!:)

Anonymous said...

Hi Tony
Yes the information given by the police is incorrect.I have had the same experience when my Grandma died at home too. It is sad to see many members of the public services do their job half heartedly just for the sake of payroll. Am glad that you have shared on Shin's blog to allow many others to have a clearer picture of what is available

Anonymous said...

Hi Tony,

I've gone through exactly like what you did when my dad was critically ill. Everyone in the family was feeling tired, but we knew the best was to spend the last moments with him, could it be crutial days, weeks or even months with him. Nothing beats that really. I cant agree more, that Hospice help was so handy. (They've got plenty of patients, but they attend to every patient with such loving care and concern. Irregardless of what time the urgent call was made, they still came.) I'm sure Shin would be very happy to spend her last days at home, and with all her family members with her. After losing my dad to cancer 8 years ago, my mum is now fighting cancer. I cant agree more to let her be home and enjoy the love and care from the family then being at the hospice.

Thanks for continuing to share your stories. Take good care, and best wishes to you, Josie and Toby. Wishing you all best of health.

Emily said...

Hi Tony, how did you make sure that there wasn't an overdose of morphine for Shin? Also, how did you handle the police & is the case settled?

Crocobuaya said...

Tony, thanks for sharing. As I have written to Shin before, my sister who passed away on 26 Jun 03 after 6 and half years battle with breast cancer also passed away at home.

Even though doctor gave her 6 months to live when diagnosed in 1997, she managed to survive for 6 and half years.

Her last month was spent at home even though doctor suggested to her to go to the Hospice. We take turns to look after her and like Shin, she went into deep sleep in the morning and passed away at 10 pm.

Its really not easy to take care of dying patient as they are in suffering in pain, discomfort and frustating for not able to express themselves.

Its also a blessing that since we knew she have not much time left, all relatives and friends made time to visit her. She have spent quality time with all of them and she even met her long lost friends.

If she is sent to a home, I dont think she have all the convenient and time to spent with all of us.

GOD BLESS, she is in peace now.

Likewise, I think SHIN is also in good hand and she will be seeing all of you and her loved ones from another place.

Take care, Tony.

Anonymous said...

I don't think it is appropriate to talk about "overdose of morphine" or police or "case settled" on this blog. We all know what Shin & her family went through and I think that it shows a complete lack of regard to even mention it! We know that Shin was loved for and cared for by her family and friends to her last breath.

Anonymous said...

Hi Tony
You all did a wonderful job in making Shin's last days as comfortable as possible. I am sure she felt very loved. May I ask if she had any last words to you or the kids?

Your family has touched me beyond words can express. Although I never met Shin, i was at her memorial. You were so courageous in standing up there and doing your poignant eulogy. I wanted to stand beside you and hold your hand as Shin would have. No doubt she was giving you strength from afar.

I wanted to share these haunting photos of portraits of people (mostly cancer patients) captured in life and death. There are some interesting thoughts in the interviews done with them in the final days before they passed. I hope you find them as beautiful and touching as i did.

http://www.guardian.co.uk/society/gallery/2008/mar/31/lifebeforedeath?picture=333325401

T

Tony said...

Anon,

I don't have a problem at all with direct questions and thoughts people have. I feel quite sure that there are many who would believe my whole discussion of openly talking about Shin's last days, is inappropriate. I feel quite clear that Shin would have wanted it and that some people will benefit from the discussion. I also know Shin was never the type to shyly not want to risk offending someone - she was much more the bull in the china shop. And personally, as i just commented on a question of ethics in the "Managing Pain" post that I dislike the elephants in the room that no one wants to talk about. Finally, I think both Shin and I really like debate much more than people nicely agreeing with us. If there is something on someone's mind, my feeling is go ahead and ask it.

Tony

Tony said...

Emily,

How did we make sure there was not an overdose of morphine? Actually we didn't focus on that we gave her morphine when she had pain or breathing problems. The morphine always helped except at the end. As I said, I'm not really sure if it was the breathing problems or the morphine that was the specific cause of her death at that moment but in my mind it doesn't really make a difference.

And there were no police/forensics issues. The question came up when Michelle was calling beforehand to find out what we do when Shin dies. It turns out the officer Michelle spoke to was incorrect. I just mentioned this as an example of how everyone Michelle spoke to seemed to think dying at home is a very rare thing in Singapore.

Tony

Emily said...

What i meant to ask Tony was how he took care not to overdose on morphine, since he had mentioned that Shin was on what was considered a lethal dose. Also, i wondered why the doctor found it strange to die at home since he was recommended by the hospice. It would be helpful to know if Tony had to deal with the police & how he resolved it. If its lots of hassle for a terminal patient to die at home, maybe thats the reason to rush them to the hospital. Tony, if i've offended you with my last post, pls ignore it & accept my apologies!

Tony said...

Anon,

On last requests. Not really. Shin had a year to prepare and you may have already read about the journals and memory boxes she had left for the kids.

As far as final conversations go, I'd say these were just personal moments. Nothing really of interest to share except of course to me. And i guess if I was going set a limit to sharing, personal final conversations is probably where I set it.

Tony

Emily said...

Thanks for your reply, Tony!

Tony said...

Sure Emily,

We must have been writing at the same time.

Tony

Emily said...

Yup :)

Anonymous said...

Hi Tony, please do continue to post because I am sure many of us don't find it inappropriate too. :)

This is what we like about you and Shin too, open minded, open to qns, debate,etc. :) and I think we asians can learn from both of you on this too. :)

Anonymous said...

Dear Tony,
Thank you for sharing all this information on Assisi Hospice, taking care of Shin in her last days etc. I for one, find the information very beneficial. It really helps me expect what's to come and how I may perhaps deal with our own situation at a later time.

My mother is a cancer patient and has stage 4 colon cancer. While she is stable for now, I know I can come to this blog for information should the need arise.

Like Shin, I followed the blogs of some cancer patients like Leroy Sievers and Miles Levine - many of these blogs ended with their writers' deaths. Either that or their loved ones would talk endlessly about their grief. I can totally understand that but all that became a little 'draining' to read after a while.

Thank you for keeping Shin's spirit alive with such rich information even as you and her loved ones grieve her passing.

Best wishes to you, Josie and Toby.

Mei Chin said...

Hi Tony, i've been a slient reader. I am taking reference from your previous post which mentioned the hallucinations Shin was experiencing; for a school project on the topic "Chinese superstitions".
Although i understand that Shin's hallucinations were as a result of both the disease and medication, the chinese old folks believe that when one is nearing death, he starts to "see" ghosts.
Recently (& coincidentally), my 96 yrs old granny has several "sightings" of unknown persons in the house & is reporting stange events.
Besides scaring us to death (once she saw a girl without face combing her long hair in my bedroom!) we have no idea how to calm her (& our nerves). How did you handle Shin with her hallucinations? How did she react after being told there was no one sitting on her lap?
However unlike Shin, my granny is not on any medication. She has no illness but just very old. If the chinese belief is true, i'd be sad to know that its a sign she is leaving us soon...

Shin said...

Hi Mei Chin,

I don't really have basis to advise you. But I can clarify that in Shin's case the hallucinations were a clear result of the medication. I forget which one actually, but i think it was a side effect of the midazolam (for anxiety). In fact I think the doctors had prescribed haloperidol at the same time and had started giving it to her before she had a hallucination because they fully expected it once they had given her the midazolam.

Also, I would say that yes even Shin who was as brave and hard headed as they come was fairly unnerved by the hallucinations. She had them a few times. Once she could have sworn she saw Josie in the room, once she saw toby on her bed and another child another time i think. I recall feeling a little unnerved myself.

So my final thoughts are 1) its normal to feel scared by it, 2) I think she can take haloperidal to help - check with a doctor.

Tony

Kathie said...

Hi Tony,

You may want to check this website out for explanation on near-death experience - hallucination.

http://www.near-death.com/experiences/lsd04.html

Quite insightful.

Kathie

Anonymous said...

Hi Tony

I did want to ask exactly the same questions that the other reader asked..my gfather and father had the same hallucinations experience before they passed away...i was too young then to understand n was in fear too..until some relatives mentioned that my gfather had lost a son n daughter to illness during their infancy so probably they are his children fetching him to where they are now..n years later when my dad was ill (lung cancer) he kept saying the same thing either a young male or sometimes a female is visiting him or in the room...it used to frighten me a lot when he asked me 'who is the girl standing behind me' and i knew i am the only one in the room.

I don't know if what my relative said is true..its their loved one that is fetching them home which in my father's case his bro and sister.

Thank you Tony for sharing.

Daphne said...

Hi Tony, thank you for the post. I sums up accurately how me and my family felt during the days before and the day my dad passed away- which was just a few days before Shin. Just to add that we were registered under Hospice Care as well and totally impressed by the care and kindness of the Hospice Staff, even the men who were here to deliver and remove the hospice bed we rented were very kind to us. And towards the end, the doctor who came to help us certify my dad's demise was very kind too and professional somewhat, full of the compassion that the hospice embodied. First thing he asked when he entered my dad's room was "is everyone managing okay? if you need anything and have any question just ask" before he proceeded to check on my dad. And he also reassured us that my dad should have passed on peacefully with no pain to further comfort our hearts. Hospice was great.
But besides the patient, caregivers need to be given attention too and caregivers must not forget to take care of themselves before and after the demise of their loved ones. From this blog I learnt so much and come to know how much you and your friends and family had done to make Shin comfortable.. this is the best gift and blessing to her I am sure. Take care and stay strong. Life is still beautiful, embrace it ! I know I will, cos Shin, you and your friends inspires me.

Anonymous said...

Tony (and Carol) - my mom sent in a donation to her local Hospice as she assumed that Shin was on Hospice. Here - Hospice is often at home (my neighbor was with 24/7 care) - sorry that you all had to be the Hospice Team - they do a teremdous job of helping the family as well as the patient.
Anyway- the aides (in my mom's Assisted Living) said that she was greatly saddened with Shin's death as she had everyone praying for Shin (now she'll move her prayers to the rest of you I am sure as that is her pattern).

Your Aunt Martha (and the rest of us)send love and prayers to all of you.
Fran

Anonymous said...

It is certainly interesting for me to read the post. Thanks for it. I like such themes and anything connected to them. I would like to read a bit more on that blog soon.