A Series of Fortunate Events

The last few times at hospice IDT (Inter-Disciplinary Team) meeting, which is a weekly review of our hospice patients by all members of the team, a number of interesting comments were made.

One nurse, who usually puts her cell phone on vibrate during patient time, forgot. During her visit, she got a call, and the ring tone struck a cord in our patient, who stood up from her wheelchair and did her version of the "happy dance".

Another patient was having issues with pain management, but absolutely would not consider skipping a planned camping trip with her kids. She is a young mom, and says that it is more important to her to create memories for the family than for her own comfort. Self sacrifice is the value, and the trip her goal. How much more can any of us ask?

A third patient had been unresponsive for the better part of 4 days. As the final family member arrived at the bedside from out of town, the patient opened his eyes, and though saying nothing with his voice, looked at all his children one by one, and then closed his eyes, and took his final breath.

Yet another patient was on his second marriage. His new wife had a dog who did NOT like this man. Yet, as the patient approached the end, the dog started hanging around the patient's room, and on his last day on earth, the dog actually jumped in to bed and slept with the man until he died. (Reminds me of Oscar, the hospice cat from Rhode Island).

There were two other "fortunate events" this past week, but they did not happen at IDT.

There was a physician in my community who has recently developed an interest in end of life issues (after many years in practice). I had spoken to him several times to help him along his learning, and this past week, I had the privilege of visiting his wife and him to assist with her hospice care for terminal pancreatic cancer. He shared that he was not sure if his interest was God's way of preparing him for his wife's illness, or for his career options after she has died. I told him it was surely both.

The last story is about another "God moment". I do a fair amount of home visits for hospice patients, and occasionally have a few spare moments between to catch an errand. I almost always stop off at the local dry cleaners on Mondays after I am done, but one recent day, I had a few minutes and went there in the early afternoon. There was only one other car there, and a lady inside. I was waiting for my things when the door opens and in walks a doc I have known for a fairly large number of years, but hadn't seen for several. He introduced me to his wife, and somewhat sheepishly told me that he and she had recently come back to the area from out of town, and she had been working in hospice where they had been. As they drove, they were discussing that perhaps he would try to catch up with me to see if there were opportunities. They decided to stop at this particular dry cleaners because they had been elsewhere but didn't care for the service. So there they were and I walk in. My fellow doc still is amazed by the "coincidence", but I am not surprised in the least. I am in awe, but not surprised.

Final thought for today: a husband of a dying patient described his role as "goalkeeper/genie". He said he will keep out all attempts to disturb his wife when she needs to be quiet, but he is the genie in the bottle with unlimited wishes he will try to grant her while he can.

I'd love to spend the next few hours writing about what I think this all means, but honestly, I don't think I could begin to do it justice. So I will let the stories speak for themselves.

Fathers

There was a family who lived a simple, lower-middle class life back in the 80's. One of the children was a bright boy, and he went off to school in Chicago. He struggled to adapt to life in the big city, but eventually was able to learn to get along. The boy's family came to visit him once, which was a big deal for them. It was a long drive, and they weren't used to the area. The boy's father managed reasonably well, but was pretty nervous about the whole trip. When he was nervous, he liked to walk, and after they made it to the boy's apartment and got situated, announced that he needed to calm his nerves with a solo walk.

The boy knew his father might not know the ways of the city, and made sure he clearly told his dad not to go more than 2 blocks east, 3 blocks north, etc. so that the dad would not stray in to an unsafe area. The dad acknowledged the instructions, and set off.

After quite some time, when the father had not returned, the boy became concerned. He went looking for his dad (remember, this is the 80's, no cell phones). He was surprised to find dad a block away, happily washing the son's car in the parking lot at the end of the block. As he watched, something occurred to the boy: this was a city parking lot, there were no hoses, and in fact, no spigots. Where had his dad got the water to wash the car?

The boy asked the father, and the dad just smiled, and opened the trunk of his own car, where there were multiple gallon jugs, filled with water. The dad had driven 6 hours with water in his trunk, to see his boy and wash his car.

Hospice folks are like that. They would gladly go out of their way to do things for their patients, and not try to take credit for it either. Generous to a fault. Fathers and hospice workers. They have a lot in common.

Rest in Peace Stanley J. Sawicki. Happy Father's Day.

Holes in the Clouds.

I am often amazed at things I hear from my hospice patients. This past week was no exception. One particularly striking discussion I had was with a young man dying of pancreatic cancer. He has two children, one is away in college, but the other just graduated from High School. This was his youngest, his daughter, his "baby girl" he liked to call her. She is getting ready to begin a new chapter in her life in so very many ways, not the least of which is learning to prepare for life without her daddy. Her party was scheduled for a Saturday, and as the day approached, the weather was not looking promising. There were over 100 guests expected, and the plans included many of them being outside under a tent. When the day finally arrived, it was pouring rain all morning. Providentially, one hour prior to the party, the rain stopped. The party was well attended, and though the man was exhausted by the end of it, he was very happy for how it turned out. About a half an hour after the party, the rain resumed, and continued the rest of the night.

As the man was describing this, he told me he had looked online at the weather radar, and that morning, had seen a "hole in the clouds". There was an area of the storm system that was clear, and it appeared as though this hole in the clouds might pass over the area just at the time of the party. He said he knew that is how it would work out, and shared a story of another time he witnessed a hole in the clouds. Apparently, as a young man, he had doubts about his direction in life, and spent some time on retreat at a monastery, high in the mountains out west.  While there, he was walking a trail, and was able to see the monastery from high up, and saw shadows of clouds approaching the grounds. As the shadow reached the main building, the cloud split in two, and the shadow passed the retreat center on either side, without darkening the monastery at all. The cloud hole closed after it passed by, and he believed that he had witnessed a miracle meant specifically for him.

For him, it was no surprise that his daughter's party would have the same miracle. In fact, he told the hospice team that he "knew" that his time would come soon, and that he would pass through a hole in the clouds to heaven.

He died on a day that was cloudy all day, except for one hour. Guess what time that occurred? 

Death Certificate Frustration

I had a call today from one of the hospice nurses today. Seems one of the patients in our hospice had died, and his physician was out of town. He practices in a large group, yet no one in his practice would sign the death certificate. The physician would not be back for 10 days, and the deceased had arranged for cremation. Now, of course, in Illinois at least, you cannot be cremated without that piece of paper certifying that you are, in fact, truly dead. (To quote the Munchkins, not merely dead, but really most sincerely dead.) I had seen the patient once on a home visit for hospice, so I agreed to sign this document and allow the family to proceed with the necessary rituals surrounding their grief. 

Now, I fully admit that I may be more sensitive to this issue than some, but it comes as a result of my own personal experience. When my mom died just over a year ago, she had been under the care of a family physician who knew her for a long time. Unfortunately, this doc had endured all the change and hassle he could, and retired from clinical practice to take a teaching job; this occurred at the same time as mom needed to go in to a nursing home. The nursing home doc was happy to take over her care, and when her terminal event (aspiration pneumonia) happened, she was admitted to the hospital under the care of a hospitalist. This particular hospitalist group worked on a one week on at a time model.  Mom was admitted to the hospital on a Saturday, and died the following Saturday. The hospitalist who cared for her during her terminal illness then left on a scheduled vacation for several weeks, and so was unavailable to sign the death certificate. Her previous physician had already left the community for his teaching job, and the nursing home doc was only in town once a month, traveling to other nursing homes the rest of the time. So here we were, grieving the loss of our loved one, and as we finalize arrangements, the funeral director informs us that no one has agreed to sign the death certificate. 

We felt that this was a significant blow to our fragile states when we needed it the least. Of course, we could have waited for the hospitalist to return, but we were hoping to deal with the paperwork, insurance, etc., while the whole family was gathered, which would not be possible if we waited. So I pulled rank on the previous physician's group practice and persuaded them to have one of the partners there sign. Using guilt as a motivator and complaints as a tool, I was able to get someone to get the document completed and we were able to get our mom's affairs in order. My brother still seethes about this today, viewing it as adding insult upon the injury of grief. I admit I cannot disagree with him.

So when I saw this from the other side, it makes me wonder: what are we docs afraid of? Will the deceased sue us? Do we think someone is counting the number of deaths we attend, and if too many, we will be investigated? Are there simply docs out there that are truly out of touch with the needs of the surviving family members? Or who are just unwilling to do anything if it "isn't their patient"? (the latter attitude does exist, but I find it amusing since the doctor-patient relationship is becoming less valued by patients and payers. Possibly more on that in a future post). I suspect a combination of these is behind the issue.

I had occasion to speak with the senior physician in that practice and asked him if they had a policy about signing death certificates for each other. He said that they did not, but that most of them would be willing to do so IF THEY COULD REVIEW THE DEATH RECORDS (not the same thing as their own chart). Now, with all the different types of medical records systems, and documentation differences, most attending physicians get at best a summary of the final events, and probably this isn't enough for these particular docs. He did mention a SINGLE CASE wherein one of the (now retired) partners signed a partner's patient's death certificate within 10 hours of the death, only to find that the cause of death was being disputed due to some possible malpractice issue (a broken off piece of a catheter of some sort). This was later construed by the plaintiff's attorney as an attempt to conceal the truth. This evidently put such a bad taste in the mouth of the group that they were all gun shy about death certificates still, 10 years later. In my discussions with colleagues, this is the only case I have heard of with an issue surrounding certifying that a patient is really deceased, and what they died of. I have, however, run in to other situations where cremation was requested and the attending physician was unavailable and the covering physicians refused to sign. How absolutely tragic for the families. I know. I've been there.

One of the things I truly love about hospice and palliative care is that we get to be patient centered. I only wish all physicians had the privilege of that mindset.