Referring doctors to hospice

You are taking care of a patient with metastatic pancreatic cancer.  The disease has spread, surgery is not an option and second line chemotherapy has failed.  He is in pain, but is poorly compliant with narcotic directions.  He keeps falling down the stairs.  His wife cries all the time.  The family is desperate for help. The patient is in the office with loved ones, looking for guidance.

“What do we do now, doc?”

 

It does not take an advanced degree to list the reasons why “hospice,” is probably the best answer:

-Better coordination of medication.

-Improved pain and symptom control

-Family counseling and coordination.

-Vital home equipment like a hospital bed, shower chair or commode.

-24hour home support.

-An alternative to hospitalization.

-May actually live longer, than with aggressive intervention.

-Bereavement therapy, when he dies.

 

Why hospice is obvious…. but, there is an answer you have not considered.

To save the doctor.  The doctor is not sick, you say?  She does not suffer, like the patient.  She moves on.  I agree, she does not suffer like the patient and her professional role gives some protection; but she does suffer in her own way.

If a doctor, day after month after year pushes for “cure” in patients who are incurable, she will fail, again and again.  With each loss she will grow more tired, more frustrated, more distant and more burned out.  If the very care she gives causes side effects which are so severe as to be difficult to separate from the disease, the doctor comes to feels she is the cause of suffering and pain.  Confused and spinning, having nothing to offer but hollow promise, the doctor’s role feels like a disease.

A physician, faced with push-to-the-wall-cure-all burn out, has two choices to emotionally survive. The first, and most common, is to practice in a field of medicine devoid of such events.  A simple answer, but it limits the number of docs who are willing to fight the toughest battles.

The other solution is to focus on the science and technology of medicine, and let one’s heart grow cold to the fear, suffering and death, which can be disease.  Then, offering only treatment intervention, instead of communication and compassion, the physician protects herself, even as she causes more harm.

On the other hand, what if the doctor had referred to hospice.  By this I mean, that the doctor involved patients, at the right time, in a comfort, palliative and hospice based approach to advanced terrible illness.  How does this choice affect the doctor?

First, and critically important, the doctor is honest with herself.  She does not live in a make believe world where 33 year old mommies with advanced melanoma survive to be grandmothers.  Rather, the doctor focuses, intellectually and emotionally, on what is realistic.  Cure, whenever possible. Extend survival, if practical. Relieve pain, as needed.  Comfort, always.  Thus, no matter what happens the doctor knows she has something to offer, other than the naked curse of failure.

The doctor does not give false hope, but has honest conversations.  It may still be reasonable to offer chemotherapy or other treatment intervention, but the goals are clear.  Perhaps, it is to extend life or to control pain. Maybe treatment is not reasonable at all.  Sincere achievable objectives relieve the doctor of stress and the feeling that she is lying, at least by action, to each patient.

Patients and doctors can have open, clear discussions in order to set goals which can be reached.  Neither wastes precious time on delusions and false promise.   Patients are saddened to learn that extended survival is not possible, but not as devastated as when they lose short-term quality, when that is all the time that remains.  Instead, patient and family are empowered by the truth.   Only the patient can determine the correct path in such difficult times and when the physician is an honest guide, she can be comforted to be helping, instead of creating obstacles by offering impossible hope.

Not only patients receive support and comfort through hospice.   The simple goal of hospice, to live the end-of-life period well, unburdens the doctor of the expectation to produce miracle cures.  This allows the physician and patient to walk together and share what is still, the miracle of life.

10 Comments

  • [...] via Referring doctors to hospice – Sunrise Rounds | Sunrise Rounds. [...]
  • D Someya Reed
    “Why hospice is obvious”…not so sure I’m with you on that. This sounds like a no-choice scenario. If the wife can’t act as caregiver and no other family steps forward (or exists), hospice wouldn’t work. If they have available financial resources, of course, they could have additional options. I can agree with “To save the doctor” only if the doctor that is willing to recommend hospice (something hospices want doctors to do) is either willing to investigate the general (to even specific, if they choose) quality of hospices in their geographical area or admit to patients that he/she knows nothing about them except philosophically. Hospice is only an obvious choice if it’s a good hospice with good people. No good hospice, at minimum, should have any valid reason for not telling a doctor how frequently they’ve been recertified (it can sometimes be over a decade between recerts), what deficiencies were found and their plan of correction. Seems fair if hospices want doctors to promote their services. The doctor need not disclose specifics to patients but I see no reason why not as the information is supposed to be publicly available. Nursing homes, by contrast, have to post theirs on the wall. No doctor is “saved” who hugs you with tears in his eyes saying he had no idea what was going on (hospice exclusion) after he’d found out what “bad” people had done to your loved one and his patient in hospice. Once is horrific enough, think about multiples. There are no do-overs in hospice. I must add that your list of hospice benefits reads too much like a hospice brochure. Realistically and honestly, it needs to have some form of “May” inserted as below (my cautionary comments are in parentheses): - (May Have) Better coordination of medication (but not necessarily if attending physician, who knows you best, is excluded and the hospice nurse simply tells you it’s all safe, take as much as you need) - (May Have) Improved pain and symptom control (but not necessarily, for instance, if a patient legally refuses a portion of care and the hospice immediately ceases all care, stands at patient’s bedside offering to relieve current suffering ONLY if patient and caregiver sign a new agreement that includes the unwanted portion of care and an “any failure to comply can and will result…in being discharged” clause…Should there be any doubts, I know this happens, the patient was my wife and I have the contract, which we were told was standard procedure for this hospice, sitting in front of me) - (May Have) Family counseling and coordination (varies widely in quality and execution…may be forced even when unwanted or unneeded) - (May Have) Vital home equipment like a hospital bed, shower chair or commode. (but don’t necessarily expect modern day equipment in tip-top shape; do expect to fight for “your” necessities that a particular hospice doesn’t consider standard) - (May Have) 24hour home support (this is too open to interpretation…rarely does a hospice provide 24 hour in-home care, most provide 24 hour phone support with minimal off-hours home visits, but small, rural hospices can sometimes get even that waived the same as they do their licensing requirement) - (May Be) An alternative to hospitalization (perhaps, but patient/family must realize that they abdicate their ability to choose hospitalization to the hospice which is less likely to approve it as the hospice must pay for it) -May actually live longer, than with aggressive intervention (perhaps, but just as difficult to prove as the studies that suggest you may live longer without ANY aggressive treatment or hospice) - (May Offer) Bereavement therapy, when he dies (this, too, varies widely in quality and execution…sometimes there is no 13-month periodic follow-up just as there is not always a “quality/satisfaction” survey mailed to every family)
    • D. Somaya Reed is correct on all counts. When in practice, I visited a great many of my hospice patients at home. I was too frequently met by the complaint, "All she did was to check my blood pressure!" Terminal care should ideally be provided by the person who has known the realities, hopes, terror, and level of acceptance of the patients and families as they face the horror of impending death. No one knows the details of each family's experience but the Oncologist in charge of their treatment. It was part of his commitment to each new patient, and should have been part of his training for his craft. What terminal care DOES represent is a cost-saving method by hospitals and HMO's to control the massive expense of the final 6 months of life. It's also a means to streamline outpatient care visits by avoiding those testy questions by patient and family which eat up the clock. Finally, it is a means to avoid the inevitable pain inherent in what we do. Hospice should be viewed in the context of our entire experience and responsibility as Oncologists. And it's sad to watch. Peter Kennedy, M.D.
      • James Salwitz, MD
        Amen. There is an inherent risk that physician's will see hospice as a way to get our of their responsibility to integrate palliative care into their daily practice. To simply "pull the plug" by referring to hospice would be a sad result. jcs
        • D Someya Reed
          You make the exact point that I was going to make on your post, "Why docs don’t do death?." I didn't post my comment there as the thread was running a different course that I didn't want to disrupt. In some cases, hospice is used as a "specialty" to be referred to in order to avoid dealing with death...a terrible out of sight, out of mind scenario or equally terrible...the patient is no longer my problem/concern. I would very much like to have heard your lecture on dealing with death. Is a transcript available?
          • James Salwitz, MD
            Thanks. I have my outline, which is not a full transcription. I tend to memorize my talks and do not use powerpoint. jcs
    • James Salwitz, MD
      Vital points. I absolutely believe that the physician's must continue to be involved with their patients. Hospice is an extension of the medical care that physician's give, not a replacement. Your points about the need to assure quality in palliative care, as in any medical arena, are of course valid. Simply stamping "hospice" on a team of service does not assure excellence. It is perhaps a measure of the growth and importance of organized end-of-life care that critics, such as yourself, are gaining voice. ics
    • It sure sounds like you've had poor experiences with hospice. I have been both the Dad trying to help his Mom, and the family physician relying on hospice to help with patients, and the care has been uniformly good, sometimes excellent.
      • D Someya Reed
        That's not surprising. Not all hospices are bad. Not even all people in a bad hospice are bad. Even our IDT had one good person but, as she put it, she was a "nobody" as only the RN's were valued. She gave us an example of how she was treated by the RN (our IDT's lead) for making a suggestion to improve a particular patient's care during an IDT meeting. Unfortunately, and even after nearly 40 years, there's just no reliably good way to know beforehand which hospice is good and which is bad should you even have a choice. If you find yourself in a bad one, there's not often time or ability to get to another one along with no assurance that the new one is any better. Hospice should come with the usual disclaimer that "your individual results may vary." And no, I'm not joking about that. Hospice, as an industry, needs to come clean with the public that bad things do happen yet they simply claim it's exceedingly rare and don't mention that it's even more rarely reported. Nursing homes used to claim that they were like sending Mom or Dad on a vacation for the rest of their lives. We all know that was likely never true and there are statistical claims that for every 1 complaint there are 4-6 that go unreported. With a similar care structure using similar, if not sometimes the same staff, why would anyone expect hospice's statistics to be any different especially in the home, a far more secluded setting? Plus, if you need to go outside the hospice...to the State level, for instance,...for resolution of a problem, you commonly have neither enough time nor energy/resolve to see the problem through. In my State there is a 45 day period before the State is required to BEGIN an investigation. National average lifespan in hospice is 26 to 29 days depending on which statistic you read. The math is pretty obvious. Which leads to one of my issues. Hospice wants to be thought of as experts in EOL care (maybe, maybe not). Hospice wants people (and their doctors) to hear the word hospice and think of nothing else but high-quality care and dignified death (maybe, maybe not). Actually hospice really wants you to think of life, as in quality of, when hospice really is about death with a "focus" on quality of life until then...the "life" part is really marketing. But your individual care depends solely on who you get. There are no common standards. COPs is really just about how to bill Medicare and even the industry admits there is little to no enforcement of anything. You can't maintain quality status by covering up (not reporting) problems, not sending out satisfaction surveys when you know the response is likely to be bad, etc. As for our experience with hospice (and no offense intended...you couldn't possibly know), "poor" doesn't even begin to describe it. Even the response by Kathleen Sebelius' staff, "That is the most horrific story of abuse by a hospice in the history of hospice in this country" along with many variations or "I don't know what you had but that wasn't hospice" can come close to what we (and primarily I mean my wife) experienced. As a quadriplegic, she could neither resist, leave nor even simply cover her ears to all that was going on around her. During her last few days, she was 42 with an unimpaired photographic memory (something else to consider), she asked me to do many things for her after she died. One of those was..."Promise me that you'll do everything in your power to make sure what happened to me in hospice doesn't happen to somebody else." In a couple of days it will be 4 years since she died. I think that not only did she feel this was the right thing to do but she also knew me well enough to know that I would need something to focus on or her death would tear me apart. She knew that I'd never give up on that promise. I'd never broken a promise to her in nearly 20 years together and I wouldn't start now. Death does not absolve you of such obligations. So I've spent much of the last 4 years researching, contacting, interviewing hospices and hospice organizations; studying law, regulations and codes; contacting health officials and governmental agencies and advocating "quality hospice." I am not out to abolish hospice. I simply want it to live up to its claims and improve to avoid future failures (not hide them). I want hospice to stop putting the burden on doctors to recommend them (while at the same time trying to get CMS to officially exclude them from the hospice "team," bashing them for their...claimed...lack of pain control and reticence to confront death) when they won't even be honest about their own shortcomings. The hospice industry has had nearly 40 years of little to no oversight. For all their claims, shouldn't we expect more from them? They have no chance to do it over. It has to be done right the first time. There are no do-overs in hospice.
        • James Salwitz, MD
          As always, I really appreciate your "willingness" to critisize an area of healthcare which has perhaps not received the study needed. I would respectfully modify (or perhaps better "clarify") one of your thoughts. Hospice should be about life; it fails when it becomes just about dying and death. It must focus on giving quality to living which requires professionalism and very hard work. I have found the feedback I receive from patients in hospice, as well as staying involved with my patients while they are receiving palliative care, goes a long way to improve quality and a focus on "life." Thanks again for your leadership in this area, jcs