Friday, August 17, 2012

I Love Hospice, But...I Do Have a "Tsk Tsk"

I have given my HM CBQ (Hotel Melanoma Chaplain Boss Queen) Tsk Tsk to people in general, doctors, including Mercola and Oz, the Tanning Industry, tanners, The Insurance Industry, everybody I can think of and just when I thought I had given my last tsk tsk, I find there's one more yet to bestow. This one's hard.

Hospice. I love Hospice. I've served as a volunteer. I say I've been "volunteer chaplain" but their paid chaplain might not appreciate that. But that's the role I played. My mother-in-law received Hospice care as she died. I've got firsthand experience with Hospice from these two angles. I also have second-hand experience with Hospice through people I've come to know, love, and respect in my Facebook ministries as well as people I know in "real life" who have dealt with Hospice. I own and recommend Hospice books. I love Hospice and have learned much from them both about myself and about death and dying.

I've come to have one very real issue that needs addressing because I'm giving Hospice the benefit of the doubt and assuming they don't realize how this comes across. What "this" is I'll get to in a minute.

First, we may need a little basic understanding of "Hospice" or "hospice." One is something of a business and can also be a facility; the other is a concept. The business or facility can be either a private or public one. Wikipedia is helpful with sorting this out succinctly, in giving the history of Hospice, and what it looks like around the world. Just doing a simple search for "hospice" can be revealing, educational, and maybe even somewhat startling.

Simply put, Hospice or, as it's sometimes incorrectly called "Palliative Care", addresses end-of-life issues as it serves a person and his or her family during the last six months to a year of life. Usually it's six months, but that's not a given. An important note: palliative care is NOT synonymous with hospice. It can lead to hospice, but palliative care is discussed here.

Hospitals now offer their own programs, and there are private businesses as well as public programs that are often offered through individual counties. Each will have their own codes and standards. Payment plans, who pays what, standards of care, who does what, what the patient can and cannot do while enrolled in their program...all are things that can vary from place to place, even ever-so-slightly, and all are issues that need to be known by the patient and their family. These policies are readily available. Ask. Don't sign anything until you've read everything you can about the place you want to be in charge of your death or the death of your loved one. That's what we're talking about: who's in charge. Humanly and corporately speaking. This isn't a "God's in charge" post, though, of course He is, but when it comes to Hospice, people are dealing with policies and they need to know and understand them.

The American Academy of Family Physicians has valuable info and links applicable to this post are here. You'll find reasonable expectations and standards to hold up to and against programs you may be looking into.

OK, now this link is to a pdf file from the Hospice Association of America, Fact or Fiction: Learning the Truth About Hospice. I suggest looking around the entire site. This isn't the ONLY Hospice Association though. There's the National Hospice and Palliative Care Organization, Hospice Foundation of America, International Association for Hospice and Palliative Care, and individual states may have their own Hospice Associations. Again, do a search.

Research your options in your area and from your hospital.

Now, my tsk tsk. Hospice folks, you can be too demanding, controlling, and authoritative at the times when people are at their most vulnerable. Usually it's more a matter of individual, personal tone and not actually policy that's the problem. But if you really do have a policy that prohibits your patients from emergency hospital care or they lose your services, that's a problem and worthy of my HM CBQ Tsk Tsk and I don't hand those out lightly. Especially to you, Hospice.

People who have already been told that their health issues are so serious and extreme that they'll probably die within six months (maybe up to a year) are in a vulnerable, frightening place. Emotions are running at the surface and you know that. You do a great job in providing help and services with this. That's your job, though. BUT, but, there's no set script they're adhering to as this happens. Emergencies can arise. I'm thinking specifically of one scenario I know about. The patient is in the depths of stage 4 cancer and just beginning Hospice. In the middle of the night the patient has a stroke. In the middle of the night the patient and family are now faced with the decision of: do we go to the ER and seek help, OR, do we stay home. See, if they stay home, they can keep Hospice! If they go to the ER, they will not have Hospice when the patient returns home, still dying, but still fighting death.

Come on, Hospice! That's not right or fair! Reading various online policies, I can see that scenario happening over and over in many families and it shouldn't. Part of the problem may be a curt tone when the family care-giver calls Hospice to find out if they can go to the ER. But part of the problem is also an understanding of policies. While policies may, indeed, state that Hospice works with doctors and wants patients to see their doctor, policies can also state that if that happens, they lose Hospice care...though that care can be reinstated later.

I know you're in the business of helping people die comfortably and at home. Going to the ER for another life-threatening situation that arises, or even for sudden complications with the situation they're dying from, jeopardizes that. That trip will prolong life and that trip relieves you of some control. But the patient and family need to be able to make that decision with your support no matter what they decide. It shouldn't be an either/or situation. The patient will come back home and the patient will, probably, still be dying and need you. Can't you give them that much?

There are probably other areas that you need to loosen the reins in. Policies will vary at each Hospice/Palliative Care, even if ever-so-slightly.

Just, please, remember you're dealing with fragile, vulnerable souls. People know death is coming. They are living with that reality every day.

Do no harm.

Make them grateful that, at the end of the day, you were chosen to help them and walk with them during this thin season.

Even when it means walking with them to the ER.

Thank you.

Charis