Care or No care

Posted by on Feb 26, 2016 in End of Life | 3 comments

Care or No care

 

A simple slip of the tongue got me thinking.   We were discussing how to guarantee that each patient who checks into our office has an Advanced Directive. Should the front desk ask or should it be part of the doctor’s checklist? What is the RN’s role? The nurse said, “Well, this is very important. Too often, our patients don’t make decisions until it is too late. Planning for End-of-Care Life is critical.”

She is right. It would be very important to make decisions if the doctors truly “give up on you,” and end all care.   I suspect the idea that their caregiver would abandon them, is a real fear for many patients. All that would remain would be fragments of life. Then, the prospect of death becomes even more terrifying, because it also means being alone.

This is why we say, when we get it right, “End-of-Life Care.”  Not only are we not going to desert you, there is a great deal of caring we can do. Pain control, ambulation, insurance and financial advise, spiritual guidance, durable medical equipment (bed, commode…), community involvement and the support a patient needs to go on … to live. Hospice and Palliative Medicine is indeed about life….about coping and hope. The timing just happens to be near its end.

We must continue to emphasize this message. Hospice does not mean we are casting you out. Palliative medicine is not what we do, when we can do nothing. Good end-of-life care is not about being dead. It is about being alive. And, as long as there is breathe in our bodies, that can be a very beautiful thing.

3 Comments

  1. I hear this all the time about Advanced Directives. From the patient’s perspective, this is what we don’t like about it. In the early part of the disease, people feel fairly well, and they don’t want to sign Do Not Resusitate orders. If our heart stops due to an allergic reaction to chemo, we want it started again. The problem with later is that some doctors don’t want to have the hard conversation with patients. So, patients end up going further and further along the disease trajectory without knowing that it’s really critical for them to make these decisions now. All patients with aggressive cancers should receive palliative care concurrently. They will be much better off down the road in terms of preparedness and expectations of what lies ahead.

  2. Well said Dr. Salwitz! Many Eastern world countries celebrate the elderly dying and do not abandon them. No one should be left to die alone.

  3. This is in no way a criticism of Dr. Salwitz, his skills or his commitment to his patients. This is merely a response to his words as written here.

    Instead of thinking of ways to guarantee that all patients have an Advanced Directive, why not SHOW patients WHY they should have one by devising a way that guarantees that all patients who do have one will have theirs honored?

    Instead of saying “Not only are we not going to desert you…” and “Hospice does not mean we are casting you out” why not PROVE to patients that they are not deserted by actually being there for them (once in hospice) and DISPROVE hospices’ statements such as ‘Doctors just hand you off to us when it’s too late or they can’t think of any other tests to do’ or ‘Doctors don’t want to take your 3am calls; they just tell us to handle it’ or ‘Doctors say they will stay involved but they don’t and it’s not our job to make them.’ This should not be for just some doctors but ALL doctors.

    Why not support sanctions against any doctor who agrees to accept the responsibilities of the Attending Physician then shirks them. Why not sanction hospices too for not keeping doctors involved since they claim (to patients) that each patient’s chosen doctor is the “most important member of the Interdisciplinary Team.” Why, then, is it not their responsibility as well to do everything possible (and documented) to keep this most important and off-site member of the team involved?

    Instead of continuing the spread of platitudes which merely encourage patient denial (“Hospice and Palliative Medicine is indeed about life…about coping and hope.”) why not HONOR the patients by telling them the truth. What kind of a MIXED MESSAGE is being sent to patients and families? On the one hand, to get into hospice, patients must agree to forego anything curative, accept the progression of a natural death and are expected to ultimately die. Then hospice and these ‘emphasized messages’ tell patients that hospice is about “life” even adding, at times, that “some patients get better and leave hospice.” I’ve yet to be given any statistics to support the frequency behind this claim by any hospice or hospice association; still they all take credit for this “miracle” even though they are barred from doing anything to hasten or postpone a patient death. How can one take credit for a cure when barred from doing anything curative? I think any credit here belongs to the patient. Yet patients know they have been deemed terminal and cannot receive curative care…how are these not polar opposites?

    Coping…meaning simply accepting the natural progression of your ultimate death…is more for the hospice in quelling any resistance to “getting their work done.” And Hope, well, in my almost seven years of studying hospice (national and international) and speaking directly with hundreds of them as well as the agencies which regulate them, the most truthful answer is still the most blunt…”You can hope for anything you want.” The most common answer, however, is “redirecting hope” in the form of being able to take a long postponed vacation, see a child’s wedding, etc. Hospice is not a final wishes agency and never has been. Anything any hospice might do (monetarily) to facilitate any event in this regard is a bonus to the patient but not an expectation and certainly not reimbursable. As to it successfully happening, it is always testimony to the fortitude of the patient. The only expectation for hospice is for the patient to not be in pain or at a pain level the patient deems an acceptable trade-off with consciousness.

    If hospice is about life then hospitals must be about death. Some in hospice, for years, have bad-mouthed physicians for their lack of skills in terminal care, their unwavering pursuit of cure, their greed in prescribing futile tests and procedures all of which lead to needless patient suffering. But one thing refutes this argument. If hospice were about life, what happens when too many of their patients live? If hospitals were about death, what happens when too many of their patients die? Both would be INVESTIGATED and likely (hopefully) shut down.

    Hospitals are about life. You are expected to survive them. That’s why you choose them.

    Hospice and Palliative Medicine is about QUALITY OF life WHILE DYING. The timing doesn’t just happen as you say in “The timing just happens to be near its end.” The timing is by design and always has been. You can’t change the meaning, except for marketing purposes, by removing the words “Quality of” and “While Dying.” Patients entering hospices know they are terminal, they know they are dying. If they are being told otherwise or softened with word games by hospice staff then who are these hospices doing it for? Certainly not the patients.

    But if you are correct and hospice is about “life” then why aren’t there any hospices or organizations celebrating the annual (roughly) 20-25% of patients categorized as live discharges as success stories? There is a national number reported as an estimate of an estimate (due to lack of full reporting) with the explanation that it includes only the reasons seen as positive…revoked hospice to seek curative measures or got better. Number of deaths, carry-overs, new signups are all tracked by number and definition. Why not discharges? CMS has enough codes to make it meaningful for the public.

    If as you say “This is why we say, WHEN WE GET IT RIGHT, “End-of-Life Care,” what is it you say when you get it WRONG? Or do you just say nothing and pretend it never happened?

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