Can We Provide Hospice Care for Patients Who Are Also Utilizing Life-Prolonging Therapies? YES!

1. Can We Provide Hospice Care for Patients Who Are Also Utilizing Life-Prolonging Therapies? YES! Anne Rogerson, RN, MSW Hospice Manager of Operations Kline Galland, Seattle, WA

2. Clinicians that work with people at the end of life very often say that compassion is one of the most important qualities of our care. It is a basic emotional support that we bring to our patients, and it is a quality that we value in ourselves and our colleagues. It is the glue of hospice work.

3. The dictionary definition is: Compassion: “sympathetic pity and concern for the sufferings or misfortunes of others.” We share an understanding of, and caring for, the struggles of our patients and families. That compassion underlies our ability to “meet patients where they’re at” which is the goal that makes this new understanding of hospice care so important.

4. Until very recently, the philosophy of hospice was essentially “AND”; Allow a Natural Death. Patients came to hospice when they no longer desired aggressive treatment, or no further treatment was available to them. They would typically sign a DNR and state that they no longer wished to return to the hospital. They understood that they would not receive treatments that prolonged their lives, but could revoke hospice if their wishes changed.

5. Hospice care has always been, and still is, focused on keeping people comfortable for the rest of the time they have left. Today we will discuss three patients with goals of care that have caused us to redefine what we consider comfort care. These patients bring their own culture, beliefs, coping skills, concerns, medical experience, knowledge of their diagnosis and personal needs into each encounter with their hospice care team. Redefining comfort care in order to meet their individual goals, has stretched our experience and skills, and challenged us to grow as providers.

6. There are multiple forces that are influencing the change in the profile of hospice patients: • Culture: Hospice is being accepted by more cultures that have philosophical and/or religious needs regarding decisions at end of life. Medical technology: until recently we weren’t able to bring many treatments into the home. • Awareness: Due to increasing knowledge about hospice among providers and the general public, and an increasing number of patients utilizing their hospice benefit, we are seeing more patients whose medical care prior to hospice incudes life-prolonging treatments that cannot be withdrawn.

7. Hospice care is rapidly moving toward including a different kind of patient. While our philosophy continues to be the same, the patients we accept has expanded significantly. • These patients meet the same Medicare eligibility criteria AND they are continuing to receive “life-prolonging treatments”. • In our case-studies we will discuss: • a patient who received IV fluids through her port 3 x weekly while on hospice. • a patient on a continuous Dobutamine drip, • a patient who was dependent tubing feedings and on a Trilogy vent via a tracheostomy • On our service, we see these treatments as comfort measures, even though they are also life prolonging.

8. We wouldn’t expect a COPD patient to stop using oxygen or a CHF patient to stop taking cardiac meds, and therefore we don’t ask people who come to us with advanced treatment modalities to stop those. The choice is ultimately to accept these complex patients with high level needs, knowing the cost and resources that are required, or to not accept them knowing that they will likely die without hospice support.

9. In order to treat our patients with real compassion, we have to be willing and able to understand their needs and goals of care, without imposing our own preconceived ideas of what they should want or be ready for. In other words, “meet them where they’re at”.

10. One example is serving our Jewish patients. As a Certified Jewish Hospice, our Conservative and Orthodox patients often take their Rabbi’s advice over their doctor’s when it comes to medical care, and especially goals of care at end-of life. For many Jewish people, it is unacceptable to withdraw nutrition and fluids when a person is dying. The mandate is to take care of people for their whole lives, and since we have the ability to give food and fluids through other routes besides oral intake, we must do so.

11. We have had many discussions with the Rabbis that serve our patients and, in the course of mutual education, we have reached an understanding that allows us to give a small amount of nutrition and fluids (D5, ½ NS) via Clysis at EOL. It may prolong life by days, but does not substantially change the dying process. If a patient starts to show signs of fluid overload, then the Rabbi can give permission to stop or slow the rate until death occurs. This helps to bring peace to the family, with the knowledge that they have followed their religious beliefs and not caused harm to their loved one.

12. Working with these complex patients means that sometimes our care doesn’t go the way we think it should. Sometimes people decline medications that would ease their pain. Sometimes patients or family members never reach an acceptance of death. Sometimes patients call 911, get intubated and die in the Emergency Room, even though we try to prevent that. In these cases, how do we evaluate the care we’ve given? What’s important is that we support them in: Defining their goals of care Changing their goals of care as their condition and understanding change Having the rest of their lives be as much the way THEY want as possible

13. In the following case studies, we will discuss three hospice patients who clung fiercely to their ability to guide their own care, and who were determined to live as long as possible. Our challenge was to meet them in their own beliefs, hopes and goals, and to find a way to deliver hospice care that was fitting for them.

14. Pause for questions and comments.

15. Case Studies: Fairly straight-forward to very complex.

16. ET was a 73 yo Caucasian woman with a terminal diagnosis of Lobular Metastatic Breast Cancer, who was on service for 40 days. She was originally diagnosed in 1998 and underwent a double mastectomy followed by Chemo-therapy. She was cancer free until 3 years ago. Recently, the cancer has been causing partial to complete bowel obstructions. Prior to admission, she was hospitalized for 10 days for a complete bowel obstruction with a bowel resection. On admission to hospice she had a known partial bowel obstruction, was weak, and appeared frail and cachectic. She was able to take in about 1,000 mL of fluids per day containing about 600-700 calories, but no solid food.

17. Meeting ET where she’s at: Prior to admission, she had been receiving IV fluids 3 x weekly on an outpatient basis, and she stated that fluids are the only way she is “hanging on”. She was well educated regarding her disease process and accepted that she was terminal. She stated also that she was not done fighting, and even though her oncologist was recommending hospice, the matter of being able to continue IVF was a “deal breaker”. Her husband had MS and they were in the middle of a kitchen remodel that would allow him to have access when he is in a wheelchair. She was determine to stay alive long enough to see the project to completion.

18. What we encountered: ET eventually developed a complete bowel obstruction which caused sudden and severe abdominal pain. She was treated with Octreotide SC TID for about 3 weeks and IV BID for the last day. Octreotide is normally given IM every Q 3-4 weeks and is used to inhibit tumor growth. ET was given daily SQ injections to reduce the size of the tumor blocking her bowel. Dexamethasone IV was also given to reduce pain and inflammation.

19. Eligibility was never a question. ET was eligible based on the diagnosis of Metastatic Breast Cancer. We anticipated that the bowel obstruction would soon progress and be the immediate cause of her death. Receiving fluids would prolong her life somewhat, which was her goal, but it would not extend her prognosis beyond 6 months. • Resources: • In 40 days (5.7 weeks), ET received 22 RN, 2 SW visits and 26 phone calls. • She received: • IV fluids 3 x week through her port • Octreotide SQ TID for 23 days and IV BID for 1 day • Dexamethasone daily for 24 days • Neupogen SQ 2 x weekly for 40 days

20. ET died the day after her 74th birthday, after finishing the kitchen remodeling project. Ultimately, this case felt like a victory for everyone involved. She was able to meet her goal and know that her husband would be able to remain in their home. She told us she would celebrate her birthday and she did. Even though the bowel obstruction was painful, we were able to treat her pain effectively and help her to have a comfortable, peaceful death.

21. Pause for questions and comments

22. BG was a 78 yo African American woman, who had a terminal diagnosis of Acute on Chronic Diastolic Heart Failure secondary to Amyloidosis, and was on service for 73 days. She had had CHF for over 10 years with co-morbidities of Atrial Fibrillation, CKD Stage 4, Depression, Hypertension, Hypothyroidism, MI, Pacemaker, S/P CVA. She has NYHA stage IV heart failure, with an EF of 12% on 2/18. She been treated in a Heart Failure clinic and had failed trials of all other cardiac medications. She was started on a continuous Dobutamine drip via a PICC line and a small portable pump that she wore on her upper arm. Due to her CKD, she has been unable to tolerate most diuretics. Prior to admission, she was hospitalized for acute SOB r/t Atrial Tachycardia and a critical exacerbation of her CHF.

23. A brief aside: A great deal of research has been done recently about the disparity of medical treatment between Caucasian and African American patients. For example, due to common misconceptions by white doctors, African American patients receive worse pain management than Caucasians.(1. Wilson, 2019) This often leads Black patients to be reluctant to give up treatments that are available to them. In addition, African American patients access their Hospice Medicare Benefit at significantly lower rates than Caucasian patients. 80% of hospice patients ae white compared to 8% black patients, even though African Americans make up 12% of the US population.2 Even though enrollment in hospice has increased for both populations, African Americans continue to be significantly less likely to die on hospice. A 2018 article by Jim Pittman cites that about 50% of Caucasian Americans die on hospice compared to less that 40% of African Americans. (2. Pittman, 2018)

24. Meeting BG where she’s at: BG was admitted to hospice as a full code. She was committed to staying alive as long as possible. She was also fully aware of and knowledgeable about the severity of her heart condition. She could state that she knew she would die from heart failure and that the Dobutamine was the only thing keeping her alive. At the same time she vigorously refused to “give up.”

25. During BG’s course of care her PICC line became occluded. Since she was dependent on the Dobutamine to keep her heart pumping, and we had accepted her with the drip, we were obligated to call 911 and have a peripheral line put in. She was then transported to the ED to have a new PICC line placed. This was a cost that we had not anticipated.

26. As expected, BG became progressively weaker during the course of her care. About 2 weeks before she died, she suddenly became hypotensive with nausea, vomiting and dizziness. We wanted to move her to GIP, but realized that as a full code they would have to call 911 and initiate CPR if her heart stopped. Up until this point, BG had adamantly refused to discuss changing her code status to DNR, even though she also said that she didn’t want CPR. At this point the RN and Social Worker had difficult conversations with BG and her brother about what would happen if her heart stopped in a nursing home setting. She was then able to sign a new POLST with a DNR, which we felt was a huge step toward accepting her prognosis and benefiting fully from her hospice care. BG stayed in GIP for 2 days with good relief of her N/V, but still very weak and dizzy. She went home at her own insistence, with increase Cg support.

27. In the end, BG did call 911 and was transported to the hospital where she died 2 days later of kidney failure.

28. Eligibility: The heart failure specialist that had been working with her was very clear that the Dobutamine would not continue to keep her heart pumping, and expected that she would die within 1-2 months. She also had CKD St 4 and a history of MI, which we believed added to her limited prognosis.

29. This was a very challenging and costly case on several levels. In terms of staff resources, she received approximately 24 RN visits, 6 SW visits, 1 MD house call and 28 phone calls, plus massage and bath aide support in 73 days (10.5 weeks). It was emotionally difficult because she held on to life so fiercely. While needing and receiving a great deal of care, in some ways she didn’t allow our team to do their jobs. She resisted education around decline and end of life, and she wouldn’t hear about needing more support over time. She interpreted all attempts to talk about realistic goals of care as “pushing her to the grave.”

30. When she called 911 and revoked hospice, it felt for many of us like a failure. But, when we debriefed her case, we came to understand that we supported her to make her own choices, and to have the end of her life be the way she wanted it.

31. Pause for questions and comments.

32. TD was a 59 yo Caucasian gentleman who was admitted with a terminal diagnosis of ALS and was on service for 56 days. Prior to hospice referral, he’d had recurrent PNA and chronic respiratory failure. About two months prior to enrolling on hospice, he was in respiratory failure, was given a tracheotomy and admitted to ICU on a ventilator. He had been going to the hospital every time he suspected another infection, but was no longer choosing to do so. He was becoming weaker, trips to the hospital were becoming more exhausting, and treatments were less effective.

33. After his stay in the ICU, TD went home on a Trilogy vent that, at the time of admission, he required only when he was laying down. At admission, he was able to bear weight, transfer to a tilt-in-space wheelchair and sit up for about 6-8 hours per day. After 2 weeks, he could only sit up for 2-3 hours and often required ventilation while sitting up. After 4 weeks, TD was bedbound and dependent on ventilation for 60% of his breaths. Of note: his wife was also an accomplished professional and an extraordinarily capable person. This is important because she was able to provide very complex care for him through the end of his life. Most families would not be able to take on this kind of care in a home setting. Even so, she often expressed being over-whelmed and had times when decision-making was very difficult.

34. Meeting TD where he’s at: TD was a well known scientist all his life. When he was diagnosed with ALS, he held a profound belief that if he could stay alive long enough, science would find a cure for him. For as long as he was able to state his choices, he remained a full code, which is why he had been trached and vented, rather than using a Bipap like most ALS patients do.

35. This is not a picture that is normally associated with hospice care! And it looks even more intimidating when there’s a kangaroo pump attached that’s giving food through a G-tube.

36. One of the struggles we had in working with TD was trying to anticipate the course that his dying process might take. We were concerned that he would have to be taken off the vent and would have severe air starvation. We had a mid-line placed so that we could give meds quickly and instructed the wife on flushing and med administration. We had Versed in the home to provide for sedation to treat SOB and agitation, and multiple forms of morphine for pain and dyspnea. In the end, TD’s strength declined gradually and he became more vent dependent. Finally his heart stopped and a family member turned the vent off. His death was peaceful and as comfortable as possible.

37. As with ET, he was eligible by virtue of his diagnosis. When he admitted to hospice, we actually thought he would die very quickly due to his recurrent PNA. • In the course of 58 days (8.2 weeks), he received 5 MD visits, 19 RN visits, 7 SW visits, 4 PT visits, 7 Massage visits, 16 Bath aide visits, and 23 phone calls. • Resources required to care for TD: • Trilogy vent and 2 visits by Respiratory therapist • Kangaoo pump with Jevity • Mid-line access applied in the home • Macy Catheter • Low air loss bed • Meds in oral, nasal and IV forms • Tilt-in-space wheelchair

38. Yes, that’s how we felt! Questions, comments?

39. What we learned: • We need a resource list of which of our staff nurses have specific skills, and are comfortable teaching their colleagues • We have to train every nurse on high-level skills at orientation • We have developed written protocols and skills checklists • We now work with a company that can come to the home to insert PICCs and Mid-lines • We have to debrief these very complex cases, especially with patients who want to live as long as possible, because they are both emotionally and professionally challenging for our staff. • Placing a hospice patient on GIP with a full code creates multiple problems for the patient and facility. • We have to try to plan ahead for what the person's death is likely to look like, and how we will keep them comfortable. • We have to account for acuity in our CM’s caseloads.

40. We need to try to anticipate possible scenarios, like GIP with full codes and occluded PIC lines? • All our staff, nursing, social work, chaplains, aides and LMTs, have to be educated and supported when working with these highly complex patients! • We are training our nursing staff on: • Accessing and de-accessing ports • PICC and Mid-line dressing changes • Pleurex drains • Macy catheters • Kangaroo and CAD pumps • Clysis

41. In conclusion, here are some things we want to pass along, should your hospice decide to take on these “out of the box”, non-traditional patients. • 1. Determining eligibility. • All 3 of these patients qualified for hospice with a terminal illness and a prognosis of 6 months or less even with the life prolonging treatments. • 2. Determining caregiver needs. • Do they have adequate support? • Do they have a realistic understanding of what the patient’s care needs will be over time and what their dying process might be like? • Do we have a back-op plan in case of emergency or care-giver breakdown, and what obstacles might keep us for implementing it? • Should we have a Social worker and/or Chaplain present at the admission?

42. 3. Thinking through what EOL might look like and having all the meds, equipment and resources in place as early as possible. • 4. Encouraging patients and families to accept all the support available to them, both to meet their needs and to support our staff. • 5. Are all staff adequately educated and supported to care for these patients effectively? • 6. What do we as an organization need to put in place to be fully organized and ready to immediately provide appropriate care for our complex patients?

43. Thanks for your interest in caring for these challenging patients! Questions, comments, discussion

44. [Dobutamine: mechanisms of action and use in acute cardiovascular pathology]. Ann CardiolAngeiol (Paris). 1991 Jun;40(6):397-402. https://www.ncbi.nlm.nih.gov/pubmed/1859148 Octreotide is used to treat severe watery diarrhea and sudden reddening of the face and neck caused by certain types of tumors (e.g., carcinoid tumors, vasoactive intestinal peptide tumors) that are found usually in the intestines and pancreas. The symptoms occur when these tumors make too much of certain natural substances (hormones). This medication works by blocking the production of these hormones. https://www.medicinenet.com/octreotide_acetate_depot-injectable_suspension/article.htm 1 Dying while black: Perpetual gaps exist in health care for African-Americans By Yolonda Wilson February 5, 2019 6.40am EST http://theconversation.com/dying-while-black-perpetual-gaps-exist-in-health-care-for-african-americans-110657 2 Hospice Use Lower Among African Americans By Tim Pittman Published January 15, 2018 https://physicians.dukehealth.org/articles/hospice-use-lower-among-african-americans 3 Doctors and Racial Bias: Still a Long Way to Go By Aaron E. Carroll Feb. 25, 2019 https://www.nytimes.com/2019/02/25/upshot/doctors-and-racial-bias-still-a-long-way-to-go.html

45. Further reading: Grubbs, Vanessa, MD, 2018, “ESRD and Hospice Care in the United States: Are Dialysis Patients Welcome?” Policy Forum Editorial, National Kidney Foundation Martin, Laura, MD, reviewed 2018, “Deciding about treatments that prolong life” https://medlineplus.gov/ency/patientinstruction McDermid, Robert C and Bagshaw, Sean M. 2009 “Prolonging life and delaying death: The role of physicians in the context of limited intensive care resources” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644722 Ochman, Phoebe. “Debunking the 10 Hospice Myths, Let’s Set the Record Straight” https://www.chaptershealth.org/hospice-myths-dispelled Unknown, 2018. “Understanding Life Support” https://www.endwithcare.org/blogs Unknown, Kōkua Mau, “Life-Prolonging Treatments, MAKING END-OF-LIFE DECISIONS” https://kokuamau.org/life-prolonging-treatments Unknown, from: Hospice Friendly Hospitals, Putting Hospice Principles into Hospital Practice, “Module 6: The Ethics of Prolonging Treatments” http://hospicefoundation.ie/wp-content/uploads/2013/10/Module-6-The-Ethics-of-Life-Prolonging-Treatments.pdf