The Case Raymond is an 87 yo WW2 vet with end- stage COPD who also has htn, T2DM, and a history of MI 15 years ago Ray’s dyspnea has worsened over the past 1-2 years and he now spends much of his day confined to his recliner His oxygen requirement has increased and he presently uses 5 L/min by NC. He needs BiPap at night and uses nebulized albuterol 5-6 times per day His appetite is poor and he has lost 20 pounds in the past three months Ray’s pulmonologist has recommended that he enroll in hospice, and Ray and his wife of 53 years have agreed

The Case Continues… The hospice RN and SW arrive at Ray’s home and find Ray leaning forward in his recliner, breathing shallowly through pursed lips, O2 tubing curled at his feet. He appears frail and debilitated After reviewing and signing all of the paperwork, Ray’s wife, Betty, produces a copy of Ray’s Living Will, which was completed 10 years ago. It clearly states that if he were to suffer a terminal illness, Ray would not want to be kept alive by artificial measures The hospice nurse then asks Ray about his “code status”. Ray replies, “When I had my heart attack, they gave me CPR and I had to get shocked twice in the hospital. I wouldn’t be here today if they hadn’t done that! I want everything done. I can’t just give up, can I?” The hospice nurse records Ray’s code status as “Full Code” in his hospice chart

Questions to Consider Is Ray’s decision to be Full Code appropriate? Is his desire consistent with the wishes he articulates in his Living Will? Can Ray still enroll in hospice if he is Full Code? What will happen to Ray if he codes while at home?

Characteristics of Patients Who Choose “Full Code” Resuscitation Status at the Time of Hospice Enrollment Amanda Sommerfeldt, MD Medical Director, Hospice of Mercy Hiawatha, IA November 5, 2012

Disclaimer Amanda Sommerfeldt has no conflicts of interest to disclose

Introduction – Hospice Services In order to be eligible to receive hospice services, 2 physicians must certify that a patient has a life-limiting illness with a prognosis of 6 months or less Generally, hospice is considered appropriate when life prolonging treatments are no longer available or are too burdensome to pursue Hospice is often viewed as a “comfort care” approach Enrollment is voluntary

Hospice and Code Status Although the emphasis is on comfort, there is no rule that patients must be DNR to enroll in hospice However, most medical professionals view artificial resuscitation as an aggressive treatment approach that is not congruent with a comfort-care philosophy Whether CPR or other resuscitation measures should even be offered to hospice patients is debated (1,2,3,4) –Futile intervention that is contraindicated based on principle of non-maleficence? OR –Patient’s decision under principle of autonomy?

Why Would Dying Patients Desire Artificial Resuscitation? A few studies have examined the treatment preferences of terminally ill patients –Most focused exclusively on patients with cancer (5,6,7,8,9,10,11) –Many done outside the US (5,6,9,10,12) Only one included patients with non-cancer diagnoses (12) –Two UK studies looked at hospice patients One 2008 study surveyed 6 cancer patients about an informational leaflet on CPR (5) A 1997 study surveyed hospice inpatients and nurses to assess attitudes about invasive procedures ranging from taking a temperature to cardiac resuscitation (6)

Many Unanswered Questions What percentage of hospice patients choose Full Code at the time of enrollment? Who is making the decision? Are patients with particular diagnoses more likely to choose Full Code? What happens to these Full Code patients? Do they receive artificial resuscitation or not?

Aims of the Present Study Determine the percentage of patients who elect Full Code at the time of hospice enrollment Compare characteristics of patients who choose Full Code with characteristics of patients who elect DNR Compare outcomes for Full Code and DNR patients

Secondary Objectives Determine the percentage of patients who complete an Advance Directive or DPOA-HC, either before enrolling in hospice or during the course of receiving hospice services Attempt to quantify how long patients live after being discharged alive from hospice, in order to assess whether they were appropriately discharged Gain a better understanding of where hospice patients die

Hypotheses Only a small percentage of patients choose Full Code at the time of hospice enrollment Full Code patients will be younger, more likely to have cancer, and more likely to have dependent children at home (11)

Methods Retrospective chart review of all 511 patients admitted to the Hospice of North Iowa (HNI) program between 1/1/08 and 6/30/08 6 month window chosen to capture a sufficient number of Full Code patients 2008 chosen as it was remote enough that most patients would be deceased Data collected between 12/1/09 and 3/30/10 from HNI paper charts Additional data obtained from hospital EHR and/or online obituaries (if necessary) Mercy Medical Center North Iowa IRB approval with waiver of informed consent

Data Collected Socio-Demographic Information –Gender –Age at enrollment –Marital status –Race –Religion –City of residence –Occupation –Presence of dependents in the home and relationship of dependent(s) to patient Hospice Information –Hospice team Mason City, Charles City, Hampton, Forest City, MNIU –Date of admission –Primary diagnosis –Date of discharge if discharged alive –Date of death –Location of death –Death while receiving hospice services (Y/N)

Data Collected (cont) Advance Care Planning Information –Advance Directive or Living Will Is AD on file in the chart? Date completed if known –DPOA-HC Is DPOA-HC on file in the chart? Date completed if known Code Status Information –Code status at admit –Decision maker(s) at admit –Code status change Yes/No Date of change if applicable –Person(s) changing code status –Code status outcome Was patient coded?

Results Between 1/1/08 and 6/30/08, 511 patients were admitted to the Hospice of North Iowa program –15 admitted as Full Code (3%) –496 admitted as DNR (97%) 506 patients were Caucasian (99%) –All 15 Full Code patients were Caucasian –4 patients were Hispanic (0.8%) –1 patient was African-American (0.2%)

Admitting Hospice Diagnosis

Gender Comparison

Age of Full Code Patients at Admission Average age 64.5 years Median 64 years Range years Standard deviation 16.2

Age of DNR Patients at Admission Average age 81.4 years Median 84 years Range 2 months – 104 years 2 children admitted during time period studied – both DNR Standard deviation 12.7

Other Patient Characteristics Marital Status Dependents in the home –33% of Full Code patients 4 had minor child(ren), 1 cared for ill spouse –1% of DNR patients 4 had minor child(ren), 1 cared for disabled adult stepson CharacteristicFull CodeDNR Marital Status Married86.7%38.3% Widowed13.3%48.4% Divorced/Separated---9.1% Single---4.2%

Religious Affiliation Full CodeDNR Religion Lutheran32%30% Catholic27%20% Methodist27%22% Baptist7%3% Other7%19% None/Atheist/Unknown---6%

Patient Occupation Types

Do Advance Directives Make a Difference? Living Will –9/15 (60%) of Full Code patients had a LW at the time of enrollment, but it was not on the chart 11% of the time –303/496 (61%) of DNR patients had a LW, but it was not on the chart 25% of the time DPOA-HC –9/15 (60%) of Full Code patients had a DPOA-HC at the time of enrollment (same patients as had LW), but, again, it was not on the chart in 1 case (11%) –328/496 (66%) of DNR patients had a DPOA-HC, but it was not on the chart 24% of the time

Who Was Involved in the Initial Full Code Decision?

Who Was Involved in the Initial DNR Decision?

Did Code Status Change? Full Code Patients –12/15 (80%) changed to DNR Patient involved in decision in 3 cases (25%) Family decided in 8 cases (67%) MD changed status in 1 case DNR Patients –1/496 (0.2%) changed to Full Code by husband Later changed back to DNR

Outcomes for Full Code Patients 14/15 patients died on hospice (93%) Of the 3 patients who remained Full Code –2 women with malignancy both died Family did not code or call 911 in one case EMS called but did not code patient in second case –1 man with heart disease was discharged alive and was still living at the end of the data collection period (3/30/10)

Outcomes for DNR Patients 454/496 patients died on hospice (91.5%) No patient coded but 2 patients died in ER 42 patients discharged alive (8.5%) –14 patients still alive at end of study period (3% of 496) One re-enrolled in hospice program and living as of 3/30/10 –13 patients readmitted to hospice and died –2 patients died on another hospice program –10 patients died without hospice –3 patients lost to follow up

Length of Time Between Hospice Admission and Death

47% of Full Code patients died within one month of enrollment in hospice 69% of DNR patients died within one month of enrollment in hospice HOWEVER –At six months, 93% of both Full Code and DNR patients had died

Location of Death for All Patients Admitted to Hospice 1/1/08-6/30/08 Full CodeDNR Location of Death Home26.7%9.5% Nursing Home13.3%44.2% MNIU46.7%27% Hospital Hospice6.7%15.3% Respite---0.2% ER---0.4% Alive6.7%2.8% Lost to follow up---0.6%

Conclusions 3% of patients in this study chose Full Code at the time of hospice enrollment Full Code patients in this study tended to be younger, married, more likely to have dependent children, and were more likely to be admitted with a diagnosis of malignancy than DNR patients Interestingly, two children were admitted to hospice during the six month time frame studied; both had a code status of DNR There were no major differences between Full Code and DNR patients in terms of religious affiliation, but patients without a religious affiliation tended to be DNR

Conclusions (Cont) Patients who worked in business, law, health care, or as bus or truck drivers were more likely to choose Full Code, whereas patients who worked in manufacturing, labor, trade, retail, food service, or agriculture tended to choose DNR When patients were directly involved in the code status decision, they were more likely to choose Full Code When the decision was made by friends or relatives, they were more likely to elect DNR

Conclusions (Cont) Patients in this study were more likely to have a Living Will and DPOA-HC then other groups of patients previously studied (13) –?Regional phenomenon –No effect on code status in this study Most Full Code patients had the code status changed at some point, usually by a family member. No Full Code patient was coded and 2 DNR patients died in the ER –Is asking about code status at the time of hospice enrollment appropriate? Survival at one month was higher for Full Code patients, but there was no survival difference seen at 6 months

Study Limitations Homogeneous population Many DNR patients may have been Full Code and/or treated aggressively in the hospital until enrollment in hospice May explain high early mortality in DNR patient population Code status discussion not standardized Areas for future study More diverse patient populations Standardize code status discussions Interview Full Code patients at the time of hospice enrollment Functional status at enrollment

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Questions? Comments? Concerns? Thank you for your time and attention!