Hospice Care

Marty, Lil, and I met with the nurse from Hospice today for about an hour and a half. They have a bunch of wonderful services they can offer. It's really a great model of health care--what health care should be really--wrap around care promoting wellness and emphasizing comfort. We are very glad for the support, although a little cautious because grandma's health is still relatively good so that, although she qualifies at the moment for services, it's not clear she will continue to qualify. Hospice staff reassess every ninety days, so it's quite possible she'll be off the program if she continues in relatively good health. It's kind of ironic actually--the full support services that Hospice offers can actually make enough difference in people's health that they no longer qualify. Ah yes, yet another American health care conundrum.

But for the time being anyway, we'll have more coverage for times when Marty's at work and I'm at school, and more support for better medical care for grandma--sometimes health care workers, sometimes companion care volunteers (since they asked Lil's interests, we suggested that perhaps there might be someone interested in gardening). And its very likely we can find someone interested in going for drives.

It is even permissible for hospice to pay for family members to give care--not that our family needs money on top of free rent (minus a few groceries and meds), but if Lil could have Hospice pay us, we could turn around and use that money to cover the private health care worker who is coming once a week, and whom Lil really likes. (We also want to keep Besa coming in case Hospice is an on again, off again type thing.)

The two services I am most looking forward to are the social worker to help coordinate services and financial decisions, and help us figure out what we can access in the community, even if grandma doesn't continue to qualify for Hospice, and then a program called "Safe Crossings" which funds a grief counselor who comes to the house to work with kids on issues like anticipatory grieving and other feelings which come up around illness and death. It may even be possible to include cousin O. if his family is interested.

It will be interesting to see how this hospice care goes--its really a different paradigm and I hope grandma can stay in the program. Under hospice, if there is any change in symptoms or an incident of concern, you start by calling the Hospice medical team. The Hospice doctors and nurses determine which treatment might be productive, or if not, than what comfort measures are most effective. It doesn't rule out hospital stays, but it does try to do much more care in the home and  use them only as a last resort or for things unrelated to terminal illness. Of course grandma can opt out of Hospice at any time and simply choose to go to the hospital. If she makes that decision, she will no longer be in the Hospice program unless she signs up again.

It is a different way to approach care and I want to write about it so family is clear about the preferences Lil is expressing.

Here's an example to illustrate the differences: In the case of Lil's heart incident two weeks ago, the first difference in a Hospice model is that, instead of us noticing that something was up and then starting the process of getting a doctor's appointment during the few times a week Lil's doctor is available (which is the point we were at when she had the heart incident--e.g. still trying to set up an appointment), we would have called the Hospice medical team on the first day of observed symptoms (mental fogginess, increased shortness of breath etc.). The Hospice nurse would have come out that day and begun adjusting meds and care to manage the symptoms working under the supervision of the Hospice doctors. The nurse then comes out every day (or as often as indicated), until symptoms are under control again. If symptoms require, they bring basic minimally invasive medical equipment--oxygen, blood pressure monitoring, kits for testing urine and blood--and do the care in Lil's familiar home environment.

If, even with that kind of preventative care, she had still gone into tachycardia as six that Thursday morning, we would have started by calling Hospice instead of the consulting nurse. What actually happened that day was that I reported Lil's symptoms to the consulting nurse, she, on the theory of better safe than sorry, had me call 911 and in three minutes there were six firemen in big boots in Lil's tiny bedroom and a giant ambulance stretcher crowded into the living room.

My observation of the medics was that they are very sincere and committed, and very well trained for dealing with many kinds of emergencies, but that they don't really know what to do with a 101 year old who doesn't quite fit the profile of a typical emergency. They have certain protocols and certain ways of doing things which are rather lockstep. None of the treatments they administered had really any effect. When grandma came out of the tachycardia and reset to a normal rhythm, she did it spontaneously. Her timing was very good actually--a few more minutes and they would have shocked her heart (there were calling in to get special permission at the time because it's outside their usual parameters of practice). We have no way of knowing if that would have been effective, and in retrospect, we know that heart shocking really isn't part of the advance directive Lil has signed.

At the time, however, I didn't have any way of knowing whether heart-shocking was something she wanted (and neither did she--when the medics are there, you just sort of do what they tell you and hope for the best. In their line of work and way of approaching things, there isn't really such a thing as informed consent--they do get consent if they can, but there's no time for real informing, even at the hospital).

It turns out that, after talking over the specifics with Lil's doctor this last week, heart-shocking is not part of Lil's advance care directive because she doesn't want extreme measures. When it comes to "Life Sustaining Treatment," the directive Lil has signed says she wants comfort measures only and prefers no transfer to the hospital unless determined to be indicated by "medical control" (this means Hospice as long as Lil is in the program)--not EMS. For things like DNR orders ("Do Not Resuscitate"), it's pretty much all or nothing--you can't start interventions to save someone and then stop halfway through after causing damage you can't address--once you start down the road of emergency interventions, EMS is basically ignoring the orders she has signed.

Shocking the heart of a younger person can be an important life saving step, but if you do it on a fragile centenarian and then follow up with CPR, you can break ribs, damage internal organs, cause internal bleeding, and even cause brain damage (from the electricity), all of which take invasive and heavy duty medical measures to address, and all of which Lil has asked to not have. We had a general idea of Lil's DNR wishes before, in theory and more or less (and she had a signed directive in her records), but now we know them in black in white--well actually in black and neon green, on a very clear sheet up on the fridge and soon to be up on the front door as well, so if medics are ever called again--especially if Marty or I is not here, it will be clear to all involved.

Once you call the medics of course (and you don't have a clear POLST--"Physician orders for life-sustaining treatment"--the neon green page), you are pretty much guaranteed a trip to the hospital. Not that this last one wasn't worth it--I think it really helped us to get all the ducks in a row and get serious about asking Lil specifically what she wants so we can set it up. Also, the information from the EKG about the state of grandma's heart was especially good to get. We know now that there is progressive damage from the congestive heart failure, and that it is not the kind of damage that will get better. The normal course of the illness is slow deterioration over many months. She is strong and healthy and doing well, but best medical guess (though the guesses vary somewhat) is that it's even odds this Christmas will be her last.

With good care and support she will likely continue to have the very good quality of life as she has been having up til now. Hospice care will help us anticipate and manage problems before they become distressing, but as long as Lil is in the Hospice program, it is unlikely we will be calling 911 for reasons related to her heart (if she breaks a bone or something like that, different story all together). If her symptoms are heart related (shortness of breath, low blood pressure, irregular rhythm) we will call the 24-hour Hospice number and work with them. They will provide the best care possible in the home unless Lil requests otherwise. They will even be giving us a home kit of the kind of medicines that need to be administered immediately so that Marty and I can do so (working with the Hospice doctor over the phone) rather than getting the EMS folks involved. Hospice will then send our Hospice nurse to the home to follow up and provide care aimed at quality of life and relieving pain and suffering.

Anyway, one of the reasons I started this blog is to help family understand the state of Lil's health, what kind of decisions she is making about her health care, and what our family is doing to support her. I think the more we all know, the better we can support her wishes, and the more prepared we will be as her health changes.

After that long interview, grandma has gone off to take a nap and I'm trying to buckle down and get some school work done as this is the last week of the quarter. Tomorrow is the last day of summer break for the boys and everyone is pretty excited about starting up school for the fall (me included--I'll have at least a little time to rub two thoughts together again...)

Please comment if you have questions or concerns or else contact me or mom and papa directly.