Monday, April 19, 2010

Who is your health care proxy?

Last Thursday was National Health Care Decisions Day. As I sat around a conference table, I asked a group of colleagues how many had completed advance directives. Only about one third raised their hands! This is astonishing to me, because we are all hospice workers, we all know what we are supposed to do. And the next question: do you know where it is? brought fewer responses.

It's sad when we don't practice what we preach. It's bad enough when we are overweight and smoke, drink too much and drive too fast. But we of all people should be the poster children for having Living Wills and Medical Powers of Attorney completed. Is this like the shoemaker whose children went barefoot? Or the carpenter without a roof?

I especially like the Five Wishes forms. These are easily obtained on the website, and completed at leisure. There is no need to pay money for an attorney. I like them for their detail, which of course you can complete as much or as little as you desire. They incorporate the Living Will and the Health Care Proxy in the same form, then go on to planning your funeral. It should be noted here that I have no ties to the Five Wishes or the Aging With Dignity organization. But I applaud them for the work they have done to improve access to advance directives and increase education about them.

So how about it? Do you have yours completed? What about your family? Do you know where it is? Does your health care provider know? If the answers to any of these questions is no, you have work to do.

Thursday, April 1, 2010

Wrongful death in Hospice

Hospice patients are supposed to die of their disease, right? At least that's what I've always thought. This week I had the shock of learning that one of my patients had been found at home dead, likely due to foul play. It's not clear exactly what happened. Another family member was with him, also dead. There was talk of murder/suicide.

Processing this event has not been easy. This patient had been in and out of the inpatient facility, most recently discharged home a couple of weeks ago. At that time, he was doing fairly well with his symptoms and disease progression. He was still ambulatory, his pain was well controlled, and he was eating to his satisfaction. He knew that when his time came to die, he could return to the inpatient facility and the nursing staff he trusted would care for him. That had been his wish, to be cared for by these nurses in his final hours. His life, and his wishes, have been taken from him.

This sort of thing has never happened to me before. I don't have statistics on untimely deaths in hospice. I know that suicide occurs, but this was so obviously not suicide, at least not on the part of the patient. Are there statistics on murders of hospice patients? Has anyone else had a similar experience? I'd like to hear about it, and how you worked through it.

Wednesday, March 24, 2010

The Rally in Tally

What I'm missing by going to Kansas City today is the Nurse Practitioner Rally in Tally. Nurse Practitioners from all over Florida are convening on Tallahassee as I write this to gather in Waller Park to Rally regarding our bills regarding prescriptive authority.

This is the 16th year we have filed bills to release the strangle hold on our practice. We can write for all medications except controlled substances. Florida is one of the last two states (Alabama is the other) denying NPs the legal authority to write for schedule 2-5 medications. This causes unnecessary delays in care, many times outright denial of care, and increase in cost of care. We have had study after study that show the safety of nurse practitioners' prescribing patterns. We put together a White Paper as well as a Senate Report, both of which concluded that there was no good reason to deny controlled substance authority to NPs.

The problem in Florida is that the Florida Medical Association funds many key legislators. The chair of the Senate Health Regulations Committee, who determines which bills get on the agenda, has been heavily supported by FMA, as has his son in his first bid this year to a legislative seat. The Senator stated publicly that he has no intention of putting our bill on the agenda, end of story. He will not do it. He said this last week at a Florida Nurses' Association Lobby Day event to a group of NPs. If the bill is not on the committee agenda, it dies. If it isn't heard in the Senate committee, it won't be heard in the House committee either. The House is looking to the Senate for leadership on this issue. So it's done.

The NPs will gather anyway, knowing this. There are many legislators who still don't know these details, and if they do, they may put pressure on their fellow legislators. There will be a lot of energy there, and at least one group, a group from Volusia County, is being introduced in the House.

I'm looking forward to hearing all about it. Wish I could be there.

Going to Kansas City

I think there's a song in there some where isn't there. It's running through my head as I pack my suitcase for a couple of days of learning and mental gymnastics.

I have the honor of being chosen to sit on the Exam Development Committee for APNs for certification in hospice and palliative care. The exam is given by the National Board of Certification in Hospice and Palliative care Nursing, NBCHPN. After taking a course in writing test questions, now I will go to this meeting and for two days we will review and create questions for the certification exam. There is actually more than one exam but they are created to be, from a test point of view, equivalent.

The process of creating good test questions has always interested me. When I found that in the early days, a non-nurse could take the certification exam and pass, I was not surprised. Some people are good at taking tests, and can figure out from the question and the answers what is considered the "right" answer. The challenge is not only making a question with a good right answer, but making good wrong answers. Not tricks, but good. Add in that it all has to be evidence or literature based, and it's clear why it takes a long time to create even one question.

I'm not sure why they chose me. They need people from various parts of the country, and I come from a region where they had an opening, that much I know. But am I really qualified? I did ok in the course, but that was rather compressed. The next couple of days in Kansas City will tell the story. One thing is clear: it's hard to be a novice again. And that's what's really going on in my head right now, this fear of maybe not measuring up to expectations. Having identified that, I feel better already.

I'll just keep singing my song; goin to Kansas City, Kansas City, here I come....

Sunday, March 21, 2010

On Call

Oh the wonder of being on call. At my agency, NPs are on call Monday through Thursday 5P-8A, or Friday through Sunday from 5P Friday until 8A Monday. The latter is my job this weekend. It's grueling at times, because the phone rings day and night. There are stretches when it doesn't ring at all. Then suddenly there is a deluge of calls at the same time. Afternoons and evenings are usually busy. But I've had nights where the phone never stopped and I never slept.

What I've learned from this experience is that my first customer is the nurse at the end of the phone line. Yes, it's about the patient, but my relationship with the calling nurse makes all the difference. I had a call yesterday from a newly hired nurse, still in orientation. He was so afraid of saying the wrong thing, of not saying the right thing, and generally of offending me. He kept calling me "ma'am". I may not be "one of the gang", but I don't want to be seen as an ogre either. I finally told him, listen, these are the things I need to know up front on a call, and I don't bite. He sort of laughed at that, and I reminded him that I'm a nurse too, but with maybe another degree and more experience. He seemed to relax a bit. Hopefully as time goes by he will get comfortable, but right now I'm hearing someone overwhelmed with everything he has to learn.

I've been doing this for several years with the same agency and many of the nurses are like phone friends. When Maggie calls, I know her distinctive voice. I know also that I'm going to get a complete description of the situation in the home, and her experience will help me understand what steps to take. I can trust her, I've learned that. I've actually met Sabrina, and she's as vivacious as her voice sounds. She brings her positive attitude to everything she does, whether a class on documentation or attending a death. The whole team of weekend nursing staff, about 15 of them, are excellent, caring nurses who understand hospice and can communicate that on the phone.

So I've spent some time cultivating a relationship with each of them. They know when they call me we will discuss the problem, and see if together we can find a solution. In turn, I know that they will not hesitate to call me, as they do with others in my group, for fear of getting barked at. In the end, the patient reaps the benefit.

Wednesday, March 17, 2010

Home again

Here in Florida, many of our patients are from elsewhere. And when they get sick and dying, they want to go "home". Home to my 93 year old patient this morning was Ohio. Dying of a cancer of unknown primary with metastasis to the liver, she was adamant that she was going to get on a plane and get to Cleveland. So we did what we could to expedite the trip.

Her son was her companion and caregiver. He was as invested in getting her to Cleveland as she was. Our social worker called the hospice agency there and faxed information so she could continue services. He took care of the flight arrangements. We made sure her medications were ordered and delivered in time before she left. She was getting Lasix, so I had the nursing staff place a Foley catheter early this morning and attach a leg bag. The nurses wrote out a list of her medications and the times she was to take each one. She had long acting medication for pain, as well as some for breakthrough, with explicit instructions for what to take when. Her son was a willing student and seemed to understand everything.

My main concern for her has to do with air travel. Most people don't realize that airplane cabins are pressurized to about 7500 feet. If you think that Denver, Colorado, is at 5000 feet, 7500 feet is really high altitude. People with heart and lung disease have no margin for error, and can have symptoms of CHF and pulmonary edema within a very short time. This woman is 93, frail, has a history of CAD, CHF, COPD, and has lymphedema of her lower extremities from tumor burden in her abdomen. She had also started to leak from her abdominal incision this morning. The effect of altitude could be most unpleasant. However, all of this was explained to her, and she was adamant. She was going.

And go she did. I hope she did ok. I hope she is there safe and sound. She and her son were going to be busy the rest of the afternoon and evening getting settled in, so we didn't expect or get a phone call. Whatever happened, it was the way she wanted it. "These bones don't belong in Florida", she said to me.

Tuesday, March 16, 2010

Family Matters

Today I was reminded how much of what we do in hospice revolves around the family instead of the patient. It is the family who are left to grieve, and they do so at different times and in different ways. They also come to grips with the impending death of their loved one on differing time lines. This makes for some interesting and challenging dynamics, not to mention conflicts, at end of life.

I worked with a son who thinks that if he makes sure that his mother gets all of her medications and food, she really won't have a terminal illness. Forget that she has progressive breast cancer and a growing tumor on her pancreas. Forget that her pain is only barely managed, and just when we think her nausea is controlled, something else tips that balance. From his point of view, she just needs to get up, move around, and be herself. His terror is barely concealed, but he thinks we don't know about it. When he is ready, we will speak of it, and try to help him deal with it.

Then there was the daughter who can't accept that her father is dying, even though he has been unresponsive with no intake in several days. After all, only a week ago, he was talking and eating. Some of the nursing staff say she's in denial, and I tell them I agree. Then I go on to explain what a wonderful coping mechanism denial is, how it helps us distance ourselves from a truth we can't accept until the time comes when we can. She will be OK, but in her own time. In the meantime, we have to give her our support too.

Finally there was a patient admitted to my inpatient unit this afternoon. The family has a history of conflict among themselves and with hospice staff. The sons who accompanied the patient were not happy about her admission, and directed their hostility to some staff members. It seemed to help to explain that hospice house admission represents loss of control to them, and we can't expect them to be happy about that. We should even expect that there would be some resistance. If we meet their hostility with friendliness and a polite attitude and don't get drawn in to their drama, we will be better able to meet the patient's needs. The sons left before I had a chance to speak with them. Hopefully tomorrow I'll be able to meet with them and address some of their issues.

Challenging, yes. Interesting, always.