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  • The way society splits patients into categories limits how people can think about improving the end of life. Commonly, for example, a person is labeled as “dying” or “terminally ill” once he has an ominous diagnosis, obviously loses weight and function, and takes to bed. From that time forward, society expects the person to speak wisely, bring life to closure, heal rifts among family members, address religious issues, and die “on time.” This myth is almost the only way to die of illness that is shown in movies, novels, health care reimbursement policies, and professional education. Does the usual person have a period that can be labeled as “dying” before death, and does that usual person only need special services then? No. Most people will not have a predictable timing of death, nor a few weeks with visibly declining health just before death. On the day that turns out to be one week ahead of death, the median lung cancer patient still has about a 50-50 chance to live two months. On the day that precedes death, the median patient with serious heart failure still has better than a 50-50 chance to live 2 months. The precise timing of death is unpredictable for some lung cancer patients and for most with heart failure. Physicians cannot predict whether and when a seriously ill person will have a heart attack or a small complication that will start a cascade of problems and lead to death. Furthermore, what matters in determining the services that the person needs is not really the proximity to death but rather the seriousness of the illnesses and disabilities and that they eventually lead to death. Those with a reliably short prognosis are only a small part of the group of people who have serious chronic illness which will worsen and eventually cause death.
  • How many people are in this category? Relying on business data from Franklin Health, at any one time about 1-2 percent of adults under 65 years of age have serious, eventually fatal chronic illness, and about 3-5 percent of those over 65. That’s the rate in cross-section. Over our life-spans, though, about three-quarters of us have a period of being so ill that we cannot take care of ourselves, and that period averages 2-3 years. The patient’s dependency involves family members in caregiving; women now spend as much time in eldercare as in care of children. The numbers of persons facing serious chronic illness will at least double over the coming twenty years, as the baby boom encounters old age. Until now, lives with serious chronic illness have been largely invisible: very few evening television stories, for example, include this phase of life. Yet, people with eventually fatal chronic illnesses use substantial resources, often inefficiently, and they and their families are profoundly disappointed with the difficulties they encounter in using the “care system.”   What is life like for people living in that wedge of eventually fatal chronic illness? Our research team started with the considered opinion that most people might follow one of three major courses, or trajectories.
  • In these schematic diagrams, function or general well-being is on the Y-axis, with good health at the top and death at the bottom. The X-axis is the passage of time in the end of life of a stereotypical patient. First is the trajectory that undergirds the society’s stereotype of dying – a long period of good function, followed by a relatively short period of losing weight, taking to bed, and dying “on time.” This is the classic course of many patients with cancer, in which the average patient is still holding her own just two months before death. Once the cancer becomes overwhelming, the losses in function and well-being are obvious each week and death becomes fairly predictable. This is the course that gave rise to hospice, and good primary care in a cancer center or a physician’s office, meshed with good hospice care, would probably serve these patients well.
  • However, more of us face an end of life that is shaped by heart and lung failure. The patient has long-term limitations on function with intermittent exacerbations, each one met by rescue treatment and followed by nearly the prior functions status. Eventually, though, one of the complications will be lethal. Since it is not possible in advance to know which one, the current hospice program is mostly unavailable. Death in this course is usually experienced as sudden and unexpected for each patient, even thought the survival time for a large group of people with these conditions can be predicted quite accurately. Good care for this population requires implementing self-care and prevention in order to limit exacerbations, advance care planning to ensure thoughtful decisions about treatments and the end of life, and availability of competent help around-the-clock to ensure effective treatment and reliable implementation of advance care plans. Building upon work with three-dozen programs in a collaborative quality improvement program in 1999, our research group here has recently started a demonstration program. Four hospice programs will provide at their own expense excellent comprehensive care for 75 patients with advanced heart or lung failure. A grant from The Archstone Foundation allows us to collect evaluation data from the study patients and a comparison group with the same conditions in the same geographic area. This project will teach about the clinical implementation of comprehensive services for this population and whether those services make a difference in the lives of patients and in the costs.
  • Those who avoid cancer and keep a strong heart and lungs ordinarily have a third course to death – one marked by severe degenerative conditions, including dementia, and overall failure of physiological reserve which is sometimes called “frailty.” In this course, the patient is quite disabled for a long time, and death comes from what might otherwise be a minor intercurrent illness. Good care for these patients relies upon assistance for daily activities, support for family or paid caregivers, and prudent use of medical interventions. Patients in the last phase of life may usefully be grouped into three trajectories, each with a characteristic time frame and key services.

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  • Palliative Care Service Across Organizational Settings Sean O’Mahony, MB BCh BAO Medical Director, Palliative Care Service Montefiore Medical Center Assistant Professor, Albert Einstein College of Medicine
  • A patients palliative care journey
    • Michael is a 56 year old man diagnosed with HIV disease in 1985, Non Hodgkins Lymphoma diagnosed in 1992 and treated at another hospital with CHOP. He lives alone and has limited social support.
    • Admitted to a palliative care unit in 2002 with depressed mood, dehydration, pain, failure to thrive, not taking his HAART medications and expressing desire to die and signed a DNR and elected to use the Hospice Benefit. His CD4 count is 50 and VL is>750000.
    • He is discharged to an HIV skilled nursing facility
  • Subsequent Course 2003 to 2004
    • Several more hospitalizations, remains debilitated
    • Placement in 3 different nursing homes on one of these transfers information on analgesic regimen is not included with the discharge record. He was receiving MSContin 200MG twice a day and gabapentin 1200 MG three times a day for neuropathic pain and re-hospitalized within 24 hours.
    • The hospice team consults with a psychiatrist who starts mirtazapine and continue to provide supportive counseling and reconnects with his family
    • HAART is restarted. His functional status improves
    • He is discharged home with home services and motorized wheel chair
  • 2005 to 2010………………
    • Multiple hospitalizations for Factor XI deficiency related lower GI bleeding, HSV esophagitis with ICU and Emergency Department Care.
    • 2 hospitalizations for Pnuemococcal Bacteremia
    • 3 Pneumothoraces
    • Has a Left upper lobe VATS in December 2009 and temporarily rescinds his DNR but designates his sister as his Health Care Proxy
    • Discontinues Hospice in 2005.
    • Receives care from 4 different agencies
    • Receives pain management from a palliative care physician and substance abuse counselor in an HIV clinic based palliative care program. He is currently receiving MSContin 200MG three times a day, Methadone 20MG three times a day and Gabapentin 1200MG three times a day. We are currently struggling to manage his venous stasis ulcers, maintain nutritional status, preserve his ability to ambulate and advocate for him in his efforts to get a new motorized wheelchair.
  • Multivariable Models for Very Sick Patients Cannot Predict Time of Death Precisely Medians of Predictions Estimated from Data on These Days before Death Median 2-month Survival Estimate 0.0 0.2 0.4 0.6 0.8 1.0 7 6 5 4 3 2 1 Lung cancer Congestive heart failure
  • Severity of Illness, not Prognosis
    • Prognosis often uncertain, right up to the end of life
    • Severity of patient condition dictates needs
    • Most patients need both disease-modifying treatments and help to live well with disease
  • Chronic, consistent with usual role Healthy Chronic, progressive, eventually fatal illness Divisions by Health Status, in the Population and Among Persons with Eventually Fatal Chronic Illness A B C
  • “ Cancer” Trajectory, Diagnosis to Death Time Onset of incurable cancer -- Often a few years, but decline usually < 2 months Function Death High Low Cancer Possible hospice enrollment
  • Organ System Failure Trajectory Time Function Death High Low Begin to use hospital often, self-care becomes difficult ~ 2-5 years, but death usually seems “sudden” (mostly heart and lung failure)
  • Time Onset could be deficits in ADL, speech, ambulation Quite variable - up to 6-8 years Death High Low Dementia/Frailty Trajectory Function
  • Uncertain Trajectory for an Individual Placed on Hospice 2002 Multiple SNFs and Hospitalizations 2003 Pastoral Care, social work counseling Reconnected with family, restarts HAART, takes anti-depressant, returns home 2004 Pnuemococcal bacteremia, pneumothoraces 2005-2008 VATS 2009 Rescinds DNR F U N C T I O N High Low Time
  • Desire for hastened death in cancer pain patients
    • A study of 64 patients referred to a cancer pain and palliative care service at MSKCC and Calvary who completed study questionnaires twice over a 4 week period
    • BPI pain interference scores decreased from 6.36 to 4.86 (p<.01)
    • DHD increased from 0.84 to 1.38 (p=.021)
    O’Mahony S JPSM 2005
  • Group Mean Non-vegetative Beck Depression Inventory II Scores and Mean DHD Scores for Subjects Treated with >300MG Daily Oral Morphine Equivalent Dose vs. <300MG Depression decreased in persons treated with in excess of 300MG between baseline & 1 Month (-1.67 vs. 2.72, t=2.36, p=.024)
  • Figure 1. Survival Time and DHD Survival Time (days) for Persons with Moderate or Severe Desire for Hastened Death versus Mild DHD Median Survival 456 Days
  • Desire for Hastened Death
    • High levels of psychological distress exist in persons treated for cancer related symptoms other than depression often for prolonged periods of time
    • Such distress shouldn’t be dismissed as
    • an inevitable correlate of advanced disease
    • Anti-depressant treatment shouldn’t be withheld because of an assumption that they won’t survive until the time required for onset of action of these medications
    • If we don’t ask our patients won’t tell: Use validated scales or simple open-ended questions
    O’Mahony S In Press JOM 2010,Ellis J 2009
  • Desire for Hastened Death
    • Screen for perceived levels of social support and conflictual relationships
    • Focus on the eixstential and religious aspects of end-of-life can lessen DHD and improve QoL
    • Higher levels of existential distress and lower perceived social support (HR=14.94) are associated with shorter survival times (HR=2.87, p=.02) but not higher doses of opioid medications. Higher religious well being (HR=.41) and better physical well-being are associated (HR=.97) with longer survival times
    • Higher doses of opioids do not predict shorter survival times
    Schroepfer TA Gerontologist 2008, O’Mahony S In Press JOM 2010, Portenoy R JPSM 2006, Good PD Int Med J 2005, Morita T JPSM 2001, Thorns A Lancet 2000
  • Desire for Hastened Death
    • Psychological distress, including hopelessness rather than pain and other symptoms are significantly associated with patients interest in hastening their own deaths
    • Higher Existential Well-being ( β =-.135, p=.049) and KPRS ( β =-.79, p=.006) were significantly predictive of lower group DHD using a GLM with GEE.
    • Change in depression ( β =.36, p=.02) and baseline DHD ( β =.30, p=.05) were significantly predictive of DHD at one month follow-up using a logistic regression approach
    Emmanuel EJ JCO 2005, Ganzini L Arch Intern Med 2009, O’Mahony S JPSM 2005, O’Mahony S JOM In Press 2010
  • Potential Strategies to Enhance End-of-Life Communication Across Institutional Settings Do Palliative Care Programs Make a Difference?
  • Multi Site Randomized Controlled Trial of In-patient Palliative Care Services
    • 517 patients in three hospitals San Francisco, Portland, Denver randomized to Palliative Care (PC) or Usual Care (UC) within the Kaiser Permanente System
    • Outcomes Patient, Family Satisfaction, clinical outcomes in the 6 months post-hospital discharge
    • PC group had longer median duration on hospice (24 vs. 12 days, p=.04)
    • DNR at hospital discharge (91.9% vs. 77.8%, p<.001)
    • 62.9% PC group died during the study vs. 55.7% UC p=.08
    • No difference in physical symptoms (p=.91), emotional symptoms (p=.07) or QoL
    • Total number of ICU days post-index hospital discharge 12 days for PC group vs. 24 days for UC group, p=.004
    • Costs for PC Group were $4855 lower than for UC group, p=.009
    J Palliat Med 2008
  • Randomized Controlled Trial of Outpatient Palliative Care Services for Advanced Cancer Patients ENABLE II
    • RCT Nov 03 to May 08 Rural NCI cancer center, related outreach clinics in NH and VA in Vermont
    • Intervention 4 weekly psycho-educational sessions and monthly follow-up by an APN vs. Usual Care
    • 322 Participants
    • Outcomes: QoL (FACT for PCare) Symptoms (ESAS) Mood (CESD) at baseline, 1 month & every 3 months until death or study completion intensity of service (number of hospital and ICU days & number of Emergency Department Visits (Data ascertained by medical chart review)
    • Mean improvement (SE) of 4.6 (2) for quality of life ( P =.02), −27.8 (15) for symptom intensity ( P =.06), and −1.8 (0.81) for depressed mood ( P =.02)
    • The estimated treatment effects in participants who died during the study were a mean (SE) of 8.6 (3.6) for quality of life ( P =.02), −24.2 (20.5) for symptom intensity ( P =.24), and −2.7 (1.2) for depressed mood ( P =.03)
    • There were no statistically significant differences between groups in the number of days in the hospital (6.6 vs 6.5, respectively; P =.14), number of days in the ICU (0.06 vs 0.06; P. 99), or in the number of emergency department visits (0.86 vs 0.63; P =.53)
    Bakitas M JAMA. 2009
  • Multi Site Case Matched Control Study
    • Administrative data for 8 community and academic hospitals in geographically distinct areas with established palliative care services between 2002 and 2004
    • Palliative Care (PC) patients were matched with controls on propensity scores within 0.05 SD for the following factors: age, sex, marital status, medical insurance, primary diagnoses, Einshauser Co-morbidity Index, Attending Specialty with usual care (UC) patients
    • GLM with direct cost as dependent variables above factors and hospital as independent variables for live discharges (89% of PC Consult patients) and persons who died (95% of PC Consult patients)
    • Adjusted net costs were $1696 lower for PC vs. UC live discharges per admission (p=.004) and $279 per day (p<.001) Laboratory, pharmacy costs and total ICU costs ($5178 per admission, p<.001) were significantly lower for PC than for UC patients
    • Adjusted net costs were $4908 lower for PC patients who died than for controlled per admission (p=.003) and $374 per day (p<.001)
    • Laboratory, pharmacy and total ICU costs ($6613 per admission, p<.001) were lower for PC than for UC patients
    • Confirmatory analysis indicated that intensity of service were similar for PC and UC patients until the reference day prior to PC consultation
    Morrison RS Arch Intern Med 2008
  • Integrating Culturally Competent Palliative Care Into the Critical Care Setting
    • Two year demonstration project supported by the Altman Foundation 2005-2007
    • Goals:
      • Establish a collaborative model between Palliative Care Service and Critical Care Medicine at MMC Weiler
      • Palliative Care APN was an intensivist and former nurse manager for critical care and neurosurgery
      • Formalized Process for Referral of SCCM level III and level IV patients to palliative care
      • Case-based teaching and debriefing of ICU staff
      • Measure the impact of this collaboration.
      • Assess family and patient satisfaction
      • 158 patients and families served O’Mahony S Palliative Medicine March2010
  • Average Non Room and Board Charges for 61 patients who died in the Weiler ICU 2/2007-8/2007 Single Site Case Control Study Mean time from admission to consultation is 2.81 days (Moses 15.5 days p<.0001) Mean time from consultation to death is 4.69 days (Moses 5.02 days, p=.65) Mean hospital charges for palliative care consultation group were lower (t=6.17, p<.0001) N Average Daily Pre Charges Average Daily Post Charges Total Average Charges Controls (Usual Care) 39 $6,639.76 $9,017.21 $125, 713.30 Cases (Palliative Care) 23 $9,490.60 $7,475.10 $90, 979.96
  • Quality of Care/Health Service Utilization
    • 33% had Do Not Resuscitate Order Prior to Consultation 83% Post
    • Lower Hospital Charges for Laboratory Tests (p=.004), Radiological Studies (p=.027) for cases than controls
    • Marginal reduction in median charges for ventilators (p=.047) and hemo-dialysis (p=.059)
    • Median charges for opioids were higher for cases than controls (p=.01) and for opioids other than fentanyl (p<.0001)
    • 35% enrolled on the Hospice Medicare Benefit
  • Quality of Death and Dying in the ICU survey of nurses and families Weiler ICU Palliative Care Project Survey Item Respondent (N) Nurses (10) Families (9) Having control of pain 8 8 Clear up bad feelings with others 2 8 Feeling at peace with dying 8 3 Keeping his/her dignity,self respect 8.5 8 Being touched or hugged by loved ones 9 9 Saying goodbye to loved ones 8 1 Having a spiritual service before death 9 8
  • Survival for Patients Stratified by Palliative Care Consultation Status for patients dying in intensive care unit beds between February 2007 & August 2007 at the intervention site Palliative Care Consult Group Non Palliative Care Consult Group Median Survival Time 12 Days for Controls and 13.5 Days for Cases (Palliative Care Consultations) Wilcoxon Test Statistic p=.81
  • Case Management and Palliative Care Project in the ED
    • Partners: MMC ED, Palliative Care Consultation Service, Monte Home Care, Jacob Perlow Hospice, Fan Fox and Leslie R. Samuels Foundation, Care Management Organization
    • Eligible Patients
      • Over 65
      • With Chronic Illnesses
    • Aims
      • To Improve the coordination of care in hospital and post hospital discharge
      • To enhance access to PCare, Hospice and Homecare
      • To reduce future use of the ED and hospital
      • Between April 21, 2005 and June 5, 2006
        • 950 Patients Screened
        • 670 Patients Eligible for Study
        • 263 Referred to Home Care
        • 287 Referred to Jacob Perlow Hospice
  • Emergency Department Palliative Care
    • Advance Practice Nurse rounds with ER attending and charge nurse to identify potentially appropriate patients
    • A palliative care trigger tool is then used by the NP to determine whether the
    • patient was eligible for the study. The triggers are as follows, (1) “Does this patient have a progressive incurable illness that is in its later stages?”
    • (2) “Do you know if the patient is expected to die on this hospital admission?”
    • (3) “Would you be surprised if this patient were to die in the next year?”
    • This was followed by a series of questions to screen for medical necessity for a palliative care evaluation including physical symptoms, psychosocial issues, and the need for advance care planning and coordination of services.
    • If the NP indicated a positive response to the triggers she contacted the patients PCP and suggested a consultation
  • Patient Characteristics
    • 30.9% of patients served died (23.3% beyond the medical center).
    • Patients with “do not resuscitate” directive 24%
    • Patients who had presenting complaint for more than 24 h 59%
    • Percentage of patients who had not visited their primary care provider
    • in preceding 3 months 75%
    • Pain at presentation to the ED 24%
    • Analgesic medications as a proportion of all medications upon presentation to the ED 9%
    • Patients with homecare services at presentation to the ED 27%
    • Patients with hospice services at presentation to the ED 2%
    • Patients with impairment in at least one ADL 69%
    • Patients who visited the ED in the 12 months before index visit 59%
    • Patients who visited the ED in the 12 months subsequent to index visit 45%
  • Service utilization, survival and functional status
    • There were significant correlations between referral to (r s =0.49, p<0.001) and enrollment on hospice (r s =0.48, p<0.001) and reduced functioning (total PPS
    • scores). Patients who enrolled on homecare had higher levels of functioning (r s =−0.25, p<0.001). The prognostic estimates of the ED physicians and nurses and project NPs however were not correlated with acceptance on either homecare or hospice
    • A stepwise linear regression model was created to identify predictors of survival
    • The predictor variables included primary diagnoses, the palliative care trigger items, mean number of symptoms, PPS scores, and patient age. Clinician’s agreement with the likelihood of death on that hospitalization (β=−126.88, p=0.033), dyspnea (β=−90.02, p=0.002), patient or family psychosocial issues (β=−79.65, p=0.030), and PPS scores (β=−3.01, p=0.019) were predictive of reduced survival time.
    • There were small reductions in the length of hospital stay compared with the baseline pre-project chart review from 7.9 to 7 days.
  • Information sharing across the continuum of care
    • Currently approximately one quarter of deaths in the US occur in long-term care facilities.
    • Analysis of site of death for persons admitted to skilled nursing fatalities under Medicare Part B in 2001 indicates that one third of such deaths occurred in acute care hospitals and 24% of such patients died within 24 hours of transfer to acute care settings (Levey CR 2004, National Nursing Home Survey 2004).
    • With rising numbers of patients staying in SNFs for 90 days or less, patients at the end-of-life can be expected to be admitted to SNFs following hospitalizations with cognitive impairment and multiple other disabilities, often on evenings or weekends, and following multiple ‘hand offs’ that are not previously known to the staff of SNFs. Inter-institutional transfers for such patients are fraught with potential for loss of important clinical information. This may render such patients vulnerable to poor pain and symptom control or to unnecessary re-hospitalizations.
  • Potential bridges between hospital based palliative care and bioethics services and long term care
    • Objectives:
    • - 1) To extend hospital-based Bioethics Consultation Services (BCS) and Palliative Care Services (PCS) to two local Skilled Nursing Facilities (SNFs), using direct face-to-face consultations and video consultations (VC);
    • -2a) Achieve improvements in quality of life and comfort for elderly residents and their families;
    • -2b) Improve the level of practice and increase staff satisfaction with palliative care content-related knowledge and bioethical analysis.
    • Methods: Two group quasi experimental project with results of pre- and post- tests evaluating
    • -content-related knowledge in aspects of end-of-life care for staff. Select pre-test and post-test questions from the End-of-Life Physician Education Resource Center (EPERC).
    • -Patient, family, and staff ratings of the quality of palliative care were measured with a Palliative Outcomes Scale (POS) one week prior to and post consultation
    O’Mahony S Palliative Care Research and Treatment December 2009
  • MONTHS TO LIVE At the End, Offering Not a Cure but Comfort By: ANEMONA HARTOCOLLIS Published: August 20, 2009 New York Times
  • Tele-health linkage between acute care and long-term care
    • Results: 72 staff attended in-services; 53 completed pre-tests and 49 post-tests. There were improvements in knowledge scores in 12 of 16 items tested which were statistically significant in regard to management of cancer pain from 63.8% to 81.5% (p = 0.03) and a trend to significance for assessment and management of delirium from 31.6% to 61.9% (p = 0.073).
    • Patient and staff aggregate response scores for the POS were significantly improved between baseline and follow-up (Wilcoxon signed-rank test p = 0.0143 and p = 0.005) at the VC site and for family and staff at the face-to-face consultation site (Wilcoxon signed-rank test p = 0.0016 and p = 0.0012).
  • Conclusions
    • The trajectory of many chronic illnesses often isn’t characterized by uniform functional decline and the ability to self-care changes.
    • This increasingly challenges models of care that are exclusively curative or palliative or confined to one institutional setting (or to one part of an organization)
    • In illnesses such as HIV simultaneous curative treatment (HAART) and hospice can improve QoL
    • Integrating palliative care service into chronic illness models may lessen barriers to access for vulnerable patients across otherwise fragmented delivery systems.
    • There is an increasing body of level II and some level I evidence to suggest that palliative care consultations are associated with reductions in acute care health expenditures and improvement in QoL and quality of care for hospitalized patients (who receive PC consultation) and some evidence to suggest that the magnitude of these cost savings is associated with the intensity of the palliative care intervention.