Comfort Care Research and Advocacy

TOPICS
1. Research: Do Palliative Care, DNR & Hospice Help Patients Live Longer?
2. Advocates on Using Hospice and Palliative Care to Cut Hospital Stays
3. Ethics & Politics
4. Pain and Palliative Doctors Compared
5. Location and Size of Hospice Organizations

Comfort care means different things to different doctors, so it is important to probe its meaning. It usually means stopping curative treatment and using palliative doctors to control pain, though they have less training at that than pain doctors.

Comfort care's main justification is to provide a more enjoyable life for seriously ill patients than a life of treatment. However advocates also say it can extend life and save money. The sections below address these ideas.

There seem to be only 2 short, small, random studies of palliative care's effect on extending life. Both have almost complete overlap between the confidence intervals on length of life in palliative and control groups, which suggests little significant difference in survival.

The bigger study finds shorter life for palliative patients, and is ambiguous about its significance. The smaller, narrower study, of one disease in one hospital, claims significantly longer life for palliative patients, and only a bio-statistician can evaluate that claim.  Both studies are described below.

Medicare is pressing hospitals to limit care and promote hospice, comfort care (symptom relief or palliative care), and "do not resuscitate" (DNR) orders, so patients die at home and do not come back to the hospital. 

• In 2009 Medicare endorsed "end-of-life/palliative care programs" to cut costs and increase bonuses to doctors and hospitals.
• In 2012 a Congressional agency, MedPAC, recommended "hospice use and the presence of advance directives" to reduce rehospitalizations.
  

An unrelated study found that hiring a lay staff person to help patients with advance care planning had no effect on mortality, but cut costs and increased patient satisfaction.

Huffington Post found some hospices earning money by enrolling patients who were not ill enough.

1. Research: Do Palliative Care, DNR & Hospice Help Patients Live Longer?
​
1.A Two Random Studies with Opposite Findings:

Kaiser Permanente (2007) Brumley et al, "Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care." J Am Geriatr Soc. 2007 Jul;55(7):993-1000. pubmed.gov/17608870
310 patients from 2002-4. followed for 6-24 months. Half the patients were randomly assigned to get palliative home visits and had nurses and doctors on call 24/7. 
Eligible: homebound patients with heart failure, COPD, or cancer, who had a hospital or emergency room visit in the year before enrollment, whose doctors would not be surprised if they died within a year, and with Palliative Performance Scale 70% or less 
Location: Kaiser HMOs in Colorado and Hawaii 
Finding: Shorter lives among patients assigned to get palliative care than patients without that care: Average survival 6.4 vs. 8.0 months after study enrollment.

• Confidence intervals were 1.1-11.8 and 1.4-14.5 months. They found the differences significant with t tests, P=.03, but not with Kaplan-Meier survival, log rank test=2.98, P=.08 (p.996).

• 75% died before the study ended. They do not say how or if the other 25% are included in their survival medians. They report no "significant differences" in the survival percent between palliative and control groups, but provide no figures.

• They omitted from palliative death rates and costs 8 patients who died before getting a palliative visit, but they do not report on or omit any similar early deaths in the control group. They omitted 5 who withdrew: 2 palliative, 3 control.
• They note that earlier deaths may reflect patients' wishes, "delineating and following patient care preferences ... may have affected survival time" (p.999).
• Sending the palliative team resulted in $7,600+$5,200 lower cost per patient, and a "strong trend toward shorter survival ... (196 days vs 242 days) after study enrollment" (p.998)
• Kaiser included administrative data, so they had complete data on costs and deaths, without depending on survey participation.
•  Study found 12 points more satisfaction among the living at 90 days (93% satisfaction if visited by team v. 81% if not), but they do not report the number alive in each group at that time. Participation in the satisfaction survey declined rapidly in any case, so it became unreliable. At 30, 60, 90, 120 days, the interview sample was 277, 216, 168, 149, 136 patients.
• Palliative group had more medical attention overall. Palliative teams tracked their patients' symptoms and prescriptions, so they could identify gaps and mistakes in care. The control group had nothing similar.

Massachusetts General Hospital (2010) Temel et al. "Early palliative care for patients with metastatic non-small-cell lung cancer." N Engl J Med. 2010 Aug 19;363(8):733-42. pubmed.gov/20818875
151 patients from 2006-2009 followed for 6 to 42 months. Half the patients were randomly assigned to get palliative home visits.
Eligible: metastatic non-small-cell lung cancer  diagnosed in past 8 weeks, fully ambulatory or in bed less than half the day (ECOG 1-2), , and understood English, and not already getting care from the palliative service.
Location:  Massachusetts General Hospital
Findings: Longer life among palliative patients than patients without palliative care: Median time from entry into the study to death or end of the study (whichever came first) was 11.6 months vs. 8.9 months, respectively.

• Confidence intervals were 6.4-16.9 and 6.3-11.4. The palliative confidence interval contains almost all the control group's interval, and overlap usually means no difference, but they do report significance, "P=.02 with the use of the log-rank test" (p.741).
• They also report 64% of the palliative group and 76% of the control group died during the study, but do not say if it is a significant difference (data from Supplement without confidence intervals).
• They say a limitation is that the palliative group had more medical attention overall. The palliative teams tracked their patients' symptoms and prescriptions, so they could identify gaps and mistakes in care. The control group had nothing similar. The authors recommend for future studies, "follow-up investigations should include a control group that receives a similar amount of attention" (p.741).
• For example a control group could have appointments with nurses, psychologists and/or pain doctors instead of palliative specialists. These are much easier to find than palliative doctors, cost slightly less, and have similar or stronger training in drug, nondrug and psychological methods. The doctor file here shows:

                                     Number of Providers     Appts/Yr.   Avg Cost   Avg Minutes/Appointment

Palliative + Hospice doctors                   500       220,000            $106        36
Pain Management doctors                  3,000    2,800,000              $90        23
Psychologists                                      11,000    4,500,000              $88        47
Licensed Clinical Social Workers    12,000    3,400,000              $68        48

1.B Comparison of Random Studies​

Both random studies are very short term, lasting only 6 months after the last patients were recruited, so they omit treatment successes which extend lives several years, while they reflect that for those where treatment does not work, the patient might have been better off with palliation. A central research area is how to tell the difference.

If both random studies are true in the 2-3-year periods which they measured, maybe palliation is more life-supporting for the ambulatory lung cancer patients in Massachusetts. Palliative consults for the homebound in Colorado and Hawaii could easily have led them to choose fewer treatments, leading to earlier deaths from acceptance or from depression. Or maybe curative care worked better for the heart failure, COPD and mixed cancer patients in Colorado and Hawaii, keeping them alive longer if they wanted. 

With only 2 small, short random studies, and wide ranges of outcomes in all groups it's easy to say, "it depends."

A big difference between real life and both these random studies is that study doctors knew the palliative care was randomly assigned, so it did not mean patients had given up. Elsewhere doctors reduce curative care for people who choose palliation, because they confuse palliation and hospice (encouraged by the close relations in the field). "Even clinicians, confuse palliative care with end-of-life care or hospice". So palliation outside these studies can be a dangerous signal for patients who want treatment too. They may be safer with pain doctors, whose certification actually includes more on drug, nondrug and psychological alleviation of pain, than palliative certification does.

A related risk is that 60% of US surgeons will not offer a high-risk operation to patients whose advance directives limit follow-up care. Patients with a Do Not Resuscitate (DNR) order are denied many other treatments too, so patients need to be careful what they wish for.

1.C Non-Random Studies

Mercy Health Center, OK (2009). Kroch et al, "Making hospital mortality measurement more meaningful: incorporating advance directives and palliative care designations." Am J Med Qual. 2010 Jan-Feb;25(1):24-33. pubmed.gov/19966112
"Patients with care-limiting orders have higher mortality than the general in-patient population; nevertheless most DNR patients (65%) still survive the hospital stay, albeit most PC [palliative care] patients (73%) do not ... Observed mortality rates for DNR and PC patients are generally higher than those expected from patient risk factors" (p.28)

Mercy Health Center, OK (2009). Kroch et al, "Making hospital mortality measurement more meaningful: incorporating advance directives and palliative care designations." Am J Med Qual. 2010 Jan-Feb;25(1):24-33. pubmed.gov/19966112
9,100 patients from 2005-2006, analyzing hospital records retrospectively. Included 995 with DNR, of which 311 had Palliative care.
Eligible: Hospital discharges and deaths Nov.'05-Oct.'06
Location: Mercy Health Center (hospital), Oklahoma City
Findings: Death rates during the current hospital stay were abnormally high for patients who had palliative care and/or DNR orders:

Hospital    Expected...  ...(Expectation Based on Patients' Condition)
  Death        Death
   Rate          Rate
   73%           31%       Palliative care patients
   35%           16%       DNR patients

This correlational study does not show if:

1. Lack of curative treatment caused the death rates to be so much higher than expected (expected rates take into account the history of the disease and other conditions, see below)
2. Counseling and acceptance of the end (or giving up) caused the death rates to be so high
3. These palliative and DNR patients would have died sooner without those orders, or later
4. There were any reasons why so few palliative patients went home to die

 

• Mercy's other patients had lower death rates than expected (p.25, they gave no figures)
• Most palliative care patients did not get to die at home (73%)
• This hospital considers both DNR and palliative care as "care-limiting" orders (p.24). 
• They frequently assign patients to palliative care whose disease is irreversible and leading to death, though death is not necessarily expected during the hospital stay, and "maintaining the patient's comfort during the dying process is the primary objective" (p.25) 
• "[G]eneral hypothesis that DNR designation identifies otherwise unobserved risk that is revealed over time during the hospital episode" (p.30) 
• Expected death rates are calculated by the CareScience method which controls for "age, sex, race, income, relative distance traveled, principal diagnosis, comorbidity-adjusted complication risk score, defining diagnosis, cancer status, chronic disease and disease history, valid procedures, admission source, admission type, payer class, and facility type" in each of "142 different disease groupings (ie. 142 distinct regression equations)" (p.26)
• The CareScience method is fairly good at predicting which patients will die during a particular hospital stay. It explains 30% to 54% of the variation in death rates (p.30)

National Hospice and Palliative Care Organization, US (2007). Connor et al, "Comparing hospice and nonhospice patient survival among patients who die within a three-year window." (J Pain+Symptom Manage. 2007 Mar;33(3):238-46. pubmed.gov/17349493
4,493 patients from 1998-2002, analyzing Medicare records retrospectively
Eligible: Patients with CHF and cancers of lung, pancreas, prostate, colon and breast who had a major progression in their disease ("indicative date") in 1999, but not 1998, who died between 15 days and 3 years after that major progression. There are detailed criteria for each disease (see below).
Location: US patients with Medicare Part B (optional doctor coverage)
Findings: Longer life for hospice patients with lung cancer or heart failure. This correlational study does not show if:

1. Longer-lived patients had more time to think about and sign up for hospice, or
2. Giving up curative treatment helped patients live longer,  or
3. Hospice's better coordination of care helped patients live longer, or
4. Other factors caused both longer lives and more hospice, such as better doctors and hospitals, health knowledge, other health experience, etc.

Significant Differences in Survival (days):

• Lung cancer 279 vs. 240, P<.00001
• Pancreatic cancer 210 vs. 189 P=.0102

Not Significant (over .05):

• Heart failure 402 vs. 321, P=.0540
• Colon cancer 414 vs. 381 P=.0792
• Breast cancer 422 vs. 410 P=.6136
• Prostate cancer 514 vs. 510 P=.8266

Potential Biases:

1. They omitted patients whose immediate treatment or lack of it led to death in the first 15 days. A majority of these omitted short lives could be patients who chose hospice, declined treatment, and died quickly, in accordance with their wishes.
2. They omitted patients whose treatment or hospice care carried them beyond 3 years. A majority of these omitted long lives could be non-hospice patients  with successful treatment.
3. They used detailed criteria for each disease, and they note their lung cancer criteria risked getting sicker patients into the control group than into the hospice group, since survival was measured from the last date in the records when lung patients switched chemotherapy drugs. Hospice patients stopped drugs, so stopped switching, while the control group kept switching, so their last switch date would be closer to death, and survival would be shorter in the control group. Breast cancer had the same bias, but still did not show a significant difference.

Healthgrades (2013) "Hospital Report Cards™ Mortality and Complications Outcomes 2013 Methodology"
"Top Five Risk Factors by Procedure or Diagnosis ... [p.45]

• Diabetic Acidosis and Coma ... DO NOT RESUSCITATE STATUS ... [p.46]
• Heart Failure ... DO NOT RESUSCITATE STATUS ... [p.47]
• Diagnosis code V49.86 (DO NOT RESUSCITATE STATUS) ... Healthgrades included this diagnosis as a risk factor in its regression analyses for all non-surgical cohorts where mortality was the outcome being assessed. It was only considered to be a risk factor when ... present on admission. This diagnosis was statistically significant in the logistic regression model for each of these cohorts." [p.50]

2. Advocates on Using Hospice and Palliative Care to Cut Hospital Stays

Hospice (even a strategic temporary signup) can provide more home care when needed, or reduce care that patients dislike. However it can also be pushed as a way to cut costs for the hospital or medical system:

American Academy of Hospice and Palliative Medicine (2011) "When patients enroll in hospice care, their days of hospitalization might be expected to go down, thanks to hospice’s 24-hour on-call capacity ... and the shift in goals of care."

DAI Palliative Care Group (2011) "Hospices and their palliative medicine specialists have proven, several studies have shown, to be effective at reducing use of hospitals for their patients... Hospitals will likely look to post-acute care networks to assist in managing the care of at-risk (for rehospitalization) patients. Should we consider deployment of palliative care specialists (physicians and nurse practitioners) by these networks to visit patients in their homes"?

New Jersey Hospital Association (2011) "Planning for 2012-2015..:

• Reductions in hospital readmission rates and penalties... More effective use of hospice
• Accountable care organizations and bundled payment... Home health and hospice have leading roles" (p.69)

Senior Housing News (2012) "Hospitals’ reimbursements will start getting docked under healthcare reform depending on 30-day readmission rates, so communities where many residents use hospice services rather than going to a hospital could be potentially benefit. [sic]"

National Quality Forum (2012) "For both Hospice and Palliative Care... treating ... symptoms ... has the strongest evidence base and helps avoid unwanted treatments and hospital/emergency department (ED) admissions and readmissions." (p.9)

Florida Hospital Association (2013) says one method they used to reduce readmissions 15% was "Evaluating the patient’s end-of-life care wishes" (p.8)

"Bon Secours [2014] already has reduced its readmission rates, improved palliative care for terminally ill patients..."

Southern California Public Radio (2014) " 'One of the major issues that we face is really trying to enhance end-of-life care,' Cedars-Sinai's Dr. Glenn Braunstein tells KPCC... He also noted that it's partially to help cut expenses, as the last month of someone's life in particular can be tremendously expensive."

3. Ethics & Politics

Lawyers Dubler and Sabatino (1991) "system of allocation implemented inconspicuously by private institutions and practitioners. This sort of rationing will be difficult to uncover and even more difficult to prove and prevent. It will respond to implied regulatory messages from Medicare and Medicaid; it will react to reimbursement formulas and market reward. Most worrisome, it will couch personal and institutional prejudice in the language of medical and quasiscientific criteria." p. 116, "Age-based Rationing and the Law" chapter in Binstock et al, Too old for health care? : controversies in medicine, law, economics, and ethics, Johns Hopkins University Press

Jeffrey Birnbaum, (May 12, 1997), FORTUNE Magazine

• “AARP struggles to decide which of its members to put first: those who are already retired or the growing number who are still gainfully employed…
• has subtly begun to focus more on boomers by shifting the emphasis of AARP's publications and products to its nonretired members…
• Today its finances remain robust, anchored in health insurance as well as royalty-producing businesses that range from annuities to prescription drugs…
• would countenance other curtailments, primarily payment cuts to hospitals and physicians, in order to keep Medicare's hospital trust fund afloat…
• now AARP has competition on the left from the militant, five-million-plus-member National Committee to Preserve Social Security and Medicare and from the labor-backed National Council of Senior Citizens. On the right are newer, free-market groups like 60 Plus, United Seniors, and the Seniors Coalition, all small but growing…
• AARP must transform itself into something unusual--an oldsters' lobby that serves people of a wide variety of interests and ages… Some AARP executives even talk about renaming the magazine. After all, what young-at-heart boomer wants to read something called Modern Maturity?" [renamed AARP-The Magazine]

Alliance for Aging Research (2003) "Drawing upon scores of scientific studies, this important report shows how systemic bias against the elderly hurts older patients in the U.S.--highlighting ways in which the healthcare system fails older Americans. The report cites serious short-comings in medical training and prevention screening, and outlines treatment patterns that disadvantage older patients."

A 2007 study at Ohio State, Duke and other hospitals found that doctors and nurses "overestimate the risk of death," so they may limit care even among patients who have low risk of readmission and death.

Brown Professor Ackerman (2012) Doctors " 'keep a portion of the savings.' This arrangement obviously provides a financial incentive to withhold expensive life-prolonging treatment from Medicare patients whose quality of life is deemed low... Whose life is it, anyway? This slogan is conventionally used to support the right to die. It applies just as much to a sick old person who wants to stay alive. Such a person deserves better than to have well-schooled manipulators coax his family into signing his death warrant."

Neurologist Robert Weinmann (2012) "The days of searching out rare and unusual diseases to care for are over: these unfortunates will be obliged to find  whatever comfort is available under the nearest bus... Quietly, with as little fanfare as possible, physicians and hospitals will be encouraged to avoid the sickest, oldest, and most complicated patients."

Gastroenterologist Michael Kirsch (2013) "This is but a single example of how the medical profession is being forced to game the system to comply with a punitive financial penalty system that is poorly disguised as a medical quality initiative."

Cardiologist Walton-Shirley (2013) "palliative care has been birthed, ... of patients labeled as "frequent fliers" at high risk for budget-busting bounce-backs... a small part of me that worries that patients who need readmission will be held captive at home or in palliative-care programs or even become ensnared in a hospice-type situation when in fact there might have been help for them"

Medicare also researches how hospices spend Medicare's money: spending is higher early in a patient's participation in hospice, and just before death.