Monday, March 9, 2009

Hospice Patients Feel Abandoned by Doctors

Many news sources are picking up on the March 9th article from the Archives of Internal Medicine* titled "Abandonment at the End of Life From Patient, Caregiver, Nurse, and Physician Perspectives: Loss of Continuity and Lack of Closure." The headlines place the blame squarely on the physician, but for those who work in hospice it is easy to see the many reasons why contact breaks down between physician and patient after hospice enrollment. The blame does not rest solely with the physician but more with the system in general.

*Which has five, count 'em five palliative care related articles and an editorial. Some of which we will highlight this week.


1. Shifting the contact person
Once someone enrolls in hospice, the nurse for the hospice team makes a full assessment of the patients needs and medical issues. There is an initial flurry of Medicare required paperwork faxed/mailed between the hospice and the doctors office. The hospice nurse becomes an extension of the doctors eyes and ears and calls the office when problems arise, a task once left for the family or patient. This may get more immediate results since the call is coming from a medical provider instead of a patient or family thus resulting in quicker symptom control.

2. Return visits are coded differently
Some people in the comments section of the USA Today argued doctors 'don't make money on dying patients.' This is somewhat true but not in the evil, money rules the world way it is made out to be. Physician visits under hospice care have a slightly different coding system to get billed and since doctors may not see a lot of patients on hospice they may not get those bills paid if they are not coded correctly. I have rarely heard this as a reason from doctors and it is one of the educational points hospice staff should help doctors offices understand.

3. What do you do on a return visit?
Patients and doctors may want to see each other and maintain contact, but the primary way that is done is for a problem based office visit. Well if your challenges are being managed well by the hospice team, you may not have a 'good reason' to make an appointment. The doctor may not want to ask a patient to come in because the patient may have difficulty getting to the office. The doctor also may not want to ask a patient to make an appointment, "just to say hi and catch up.' The classic paradigm for doctors in the past few decades has been to recede from the point of care at the end-of-life. With the growth of comprehensive end-of-life education a new breed of doctors may emerge to demonstrate more physician involvement near death is better.

4. "I have new doctors now."
Well I have a job as a palliative care specialist for some reason, and that is because patients with life-threatening illness may need a different type of doctor. With more hospice and palliative care doctors, our community doctors may feel more comfortable handing over the leadership of clinical care to us. Some prefer to maintain input, others hand it over gladly. Without the constant feedback that someone is on hospice, the community doctor may easily forget given the harried workload of most physicians. Not their fault, just the demands of the system. It is a misunderstanding that hospice requires the patient to accept their physician. The patient has the right to choose the physician of record. Hospice should be about choice.

5. Geographic distribution
A home visit would be a rare treat these days given the wide service area of most physicians. The doctor you have been seeing for 20 years even though you have moved 20 miles away, is unlikely to make a home visit. Again with the demands of the schedule and increased travel times, this becomes more and more difficult.

6. Lack of connectivity
It may be as simple as not realizing the impact of the connection a doctor has with a patient's family. I know this has happened to me when I have walked by a patient's room and the family chased me down the hall asking if I was going to see them today. When I replied someone else was covering, they acted disappointed. And this was a family and patient I did not necessarily feel a strong connection with. I am sure other health care workers have experienced this as well. I know I have been on the other end when I have disappointed a family because I was not one of my partners. (Eventually, I win them over!)

7. Phone calls get scrunched out of the day
Everyone knows a physician's office is a busy place, and even the most well-meaning physician may want to call a hospice patient at home to check how they are doing, but again the pressures of a packed schedule may make this item drop to the bottom of the list. Even though the physician desires more contact. In addition, phone calls are rarely reimbursed, so making time to do this is not encouraged by the smaller margins being seen in health care.

8. Who is the important doctor?
Is it the primary care doctor or the specialist who has been following the patient more closely over the years? When the patient identifies more with the specialist but the primary care doctor is the one managing hospice orders, it is easy to understand how the specialist may lose contact.

Efficient offices can manage to maintain contact during and after the hospice period. There are ways to overcome these and other barriers to non-abandonment for hospice patients and their families. But it takes a more systematic approach. One successful approach I have observed is a log of hospice patients that get calls every two weeks by a office staff member. With some creativity and structured format you can build a caring system.

Hospice agencies can help support this connection as well. For doctors with many patients on service, a list of patients with home phone numbers, key family members names, and a quick update could go out every few weeks to the office. If a patient and family highlight their relationship with the doctor give the doctors office a call and let the doctor hear the esteem they command and encourage the doctor to make an outreach.

ResearchBlogging.orgAnthony L. Back, MD, Jessica P. Young, MS, Ellen McCown, BA, Ruth A. Engelberg, PhD, Elizabeth K. Vig, MD, Lynn F. Reinke, PhD, Marjorie D. Wenrich, MPH, Barbara B. McGrath, PhD, J. Randall Curtis, MD, MPH (2009). Abandonment at the End of Life From Patient, Caregiver, Nurse, and Physician Perspectives Archives of Internal Medicine, 169 (5), 474-479

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