JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number 1, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0080
Personal Reflection
Hospice Revocation with Pleasure Howard Homler MD, FACP
T
Her ascites was intractable, however. Her polycythemia was controlled with Hydrea, and her bone marrow showed only mild fibrosis and no increase in blasts. As a result of her illness, Ann lost her job with a local phone company and now spent most of her time in a bed in her living room. She denied drug or alcohol abuse, and was furious that her university hospital records (which she herself reviewed earlier) referred to her having ‘alcoholic cirrhosis.’ Her internist felt that referral to hospice was appropriate because of Ann’s poor compliance with outpatient visits and because the local university liver specialists felt she wasn’t a candidate for transplant, due to her alleged ‘alcoholism.’ I decided to go out to meet her at her apartment, as she also needed a paracentesis for ascites that was not responding to diuretics (her compliance with the diuretics was also an issue). Her entire body was swollen with fluid—she was bright yellow, her abdomen lifted the sheets because of the ascites, and her legs were like tree trunks. She was lethargic, but able to communicate. While quietly draining off some ascitic fluid at her bedside, I found Ann clearly knew that her condition was grave. However, she pleaded, ‘‘I want to live, I’m not ready to die or give up just yet.’’ I researched the literature and found that transplants were sometimes done in patients with Ann’s underlying hematological disorder and thrombi. It appeared to me that she might still have some treatment options that could give her a healthier and longer life. I reviewed Ann’s case with another transplant team at a nearby regional center. They agreed to see her for a consultation, but it took much more effort to get Ann to deal with her ambivalence about seeing more doctors and undergoing more tests. She found a variety of excuses to cancel appointments with the center. With the help of our hospice chaplain and social worker, she was able to work through her personal issues that made her seem so ‘difficult,’ even when her wishes for treatment were possibly about to be granted. The hepatologists examined her and considered her for liver transplant after confirming that she didn’t have significant marrow fibrosis related to her polycythemia rubra vera. At this point, Ann officially revoked hospice and pursued aggressive therapy with the transplant center. She developed a variety of subsequent serious infections, including peritonitis and endocarditis. Thereafter, I lost track of her but let her internist know that if her condition again showed signs of irreversible decline, we’d be happy to take her back on our hospice service.
here’s been much said about patients who either ‘expect a miracle,’ deny that they are ill, disagree with their terminal prognosis, and are just plain ‘difficult.’ Ann’s case started out as one of those, but ended up having a major impact on me and the hospice company. I was new as a part-time hospice team physician, having spent most of my career as a general internist in solo practice. Adding hospice work was challenging and interesting. I offered what advice on medication management I could during our weekly team meetings. At one particular team meeting, the nursing staff reported about our new patient, Ann (not her real name). Ann, 37 years old, was living in an apartment and dying of advanced liver disease. The staff were concerned because she disliked their visits and did not cooperate with treatment recommendations. The nurses said she was ‘in denial’ about her diagnosis and told them she was determined to live to see her son graduate from high school the following year. She was upset that her doctors referred her to hospice. She canceled visits, lost paperwork we gave her for resources for in-home assistance and for making funeral arrangements. She didn’t follow her low sodium diet. We felt that being upset and angry about her diagnosis was perfectly expected and appropriate—however the situation was becoming increasingly stressful for all concerned. The hospice nurses asked me if I had any medication suggestions— antidepressants, tranquilizers, etc. She was felt to be a ‘high revocation risk’—meaning she was likely to refuse further hospice services, despite being in need of care for an imminent death. A patient may seek to change hospice companies, go it alone without support, or seek aggressive but futile medical care. I’m often dismayed when our hospice patients revoke services, as they often end up with more suffering and meager life extension. I carefully reviewed Ann’s medical records that were sent over when she was referred. She had polycythemia rubra vera, diagnosed in 1995. She underwent a splenectomy in 2008 for massive, symptomatic splenomegaly, and this was complicated by hepatic and portal vein thromboses. She subsequently developed symptoms of decompensated liver disease and was hospitalized several times. A liver biopsy in 2011 showed chronic and active steatohepatitis and extensive fibrosis. She had evidence of cleared hepatitis B infection, and immunity to hepatitis A. Her bilirubin was as high as 26 and MELD score was in the 30s. She didn’t have encephalopathy, bacterial peritonitis, or bleeding esophageal varices.
Carmichael, California.
84
PERSONAL REFLECTION
That was four years ago. Last week I got a call from a woman, identifying herself as Ann. She said that I had taken care of her when she was on hospice. That I had listened to her when other people hadn’t. That as a result of our hospice team’s efforts, she got another chance to live. She explained that her liver, miraculously, improved. She came off the transplant list. She lost over 50 pounds of fluid-weight and no longer had jaundice. Her polycythemia remains controlled and her serum albumin is back to normal. Not only did she live to see her son graduate from high school, but see him start training to become a paramedic. She plans to go back to school, too. At the end of our conversation, she wanted me to thank the team. I invited her to come to our upcoming team meeting and thank them herself. None of us recognized her. She looked great! She was no longer bright yellow and bloated. She was trim and fit. Her hair was done and she was well dressed. Ann wore a smile none of us had seen on her before. She thanked the team for being ‘angels’ when she was feeling so hopeless and for helping her get her life back. I don’t think we’ve ever had a
85
hospice patient come to the team meeting and thank us in person for not letting them die! We learned important things from Ann’s case. Mainly, it is crucial to identify the patient’s goals of therapy. In her case, she wasn’t ready to die and wasn’t ‘in denial.’ She truly wasn’t ready for hospice. When a patient revokes hospice services, we often feel we’ve not done an adequate job of teaching or caring. Ann was a delightful exception. Acknowledgment
I thank Mrs. Bettina Flores for editorial assistance and Chaplain Janice Hollowell and Social Worker Marie Copher of Team 276 of Sacramento VITAS for their expertise. Address correspondence to: Howard Homler MD, FACP 6660 Coyle Avenue, Suite 250 Carmichael, CA 95608 E-mail: [email protected]
Copyright of Journal of Palliative Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Personal Reflection
Hospice Revocation with Pleasure Howard Homler MD, FACP
T
Her ascites was intractable, however. Her polycythemia was controlled with Hydrea, and her bone marrow showed only mild fibrosis and no increase in blasts. As a result of her illness, Ann lost her job with a local phone company and now spent most of her time in a bed in her living room. She denied drug or alcohol abuse, and was furious that her university hospital records (which she herself reviewed earlier) referred to her having ‘alcoholic cirrhosis.’ Her internist felt that referral to hospice was appropriate because of Ann’s poor compliance with outpatient visits and because the local university liver specialists felt she wasn’t a candidate for transplant, due to her alleged ‘alcoholism.’ I decided to go out to meet her at her apartment, as she also needed a paracentesis for ascites that was not responding to diuretics (her compliance with the diuretics was also an issue). Her entire body was swollen with fluid—she was bright yellow, her abdomen lifted the sheets because of the ascites, and her legs were like tree trunks. She was lethargic, but able to communicate. While quietly draining off some ascitic fluid at her bedside, I found Ann clearly knew that her condition was grave. However, she pleaded, ‘‘I want to live, I’m not ready to die or give up just yet.’’ I researched the literature and found that transplants were sometimes done in patients with Ann’s underlying hematological disorder and thrombi. It appeared to me that she might still have some treatment options that could give her a healthier and longer life. I reviewed Ann’s case with another transplant team at a nearby regional center. They agreed to see her for a consultation, but it took much more effort to get Ann to deal with her ambivalence about seeing more doctors and undergoing more tests. She found a variety of excuses to cancel appointments with the center. With the help of our hospice chaplain and social worker, she was able to work through her personal issues that made her seem so ‘difficult,’ even when her wishes for treatment were possibly about to be granted. The hepatologists examined her and considered her for liver transplant after confirming that she didn’t have significant marrow fibrosis related to her polycythemia rubra vera. At this point, Ann officially revoked hospice and pursued aggressive therapy with the transplant center. She developed a variety of subsequent serious infections, including peritonitis and endocarditis. Thereafter, I lost track of her but let her internist know that if her condition again showed signs of irreversible decline, we’d be happy to take her back on our hospice service.
here’s been much said about patients who either ‘expect a miracle,’ deny that they are ill, disagree with their terminal prognosis, and are just plain ‘difficult.’ Ann’s case started out as one of those, but ended up having a major impact on me and the hospice company. I was new as a part-time hospice team physician, having spent most of my career as a general internist in solo practice. Adding hospice work was challenging and interesting. I offered what advice on medication management I could during our weekly team meetings. At one particular team meeting, the nursing staff reported about our new patient, Ann (not her real name). Ann, 37 years old, was living in an apartment and dying of advanced liver disease. The staff were concerned because she disliked their visits and did not cooperate with treatment recommendations. The nurses said she was ‘in denial’ about her diagnosis and told them she was determined to live to see her son graduate from high school the following year. She was upset that her doctors referred her to hospice. She canceled visits, lost paperwork we gave her for resources for in-home assistance and for making funeral arrangements. She didn’t follow her low sodium diet. We felt that being upset and angry about her diagnosis was perfectly expected and appropriate—however the situation was becoming increasingly stressful for all concerned. The hospice nurses asked me if I had any medication suggestions— antidepressants, tranquilizers, etc. She was felt to be a ‘high revocation risk’—meaning she was likely to refuse further hospice services, despite being in need of care for an imminent death. A patient may seek to change hospice companies, go it alone without support, or seek aggressive but futile medical care. I’m often dismayed when our hospice patients revoke services, as they often end up with more suffering and meager life extension. I carefully reviewed Ann’s medical records that were sent over when she was referred. She had polycythemia rubra vera, diagnosed in 1995. She underwent a splenectomy in 2008 for massive, symptomatic splenomegaly, and this was complicated by hepatic and portal vein thromboses. She subsequently developed symptoms of decompensated liver disease and was hospitalized several times. A liver biopsy in 2011 showed chronic and active steatohepatitis and extensive fibrosis. She had evidence of cleared hepatitis B infection, and immunity to hepatitis A. Her bilirubin was as high as 26 and MELD score was in the 30s. She didn’t have encephalopathy, bacterial peritonitis, or bleeding esophageal varices.
Carmichael, California.
84
PERSONAL REFLECTION
That was four years ago. Last week I got a call from a woman, identifying herself as Ann. She said that I had taken care of her when she was on hospice. That I had listened to her when other people hadn’t. That as a result of our hospice team’s efforts, she got another chance to live. She explained that her liver, miraculously, improved. She came off the transplant list. She lost over 50 pounds of fluid-weight and no longer had jaundice. Her polycythemia remains controlled and her serum albumin is back to normal. Not only did she live to see her son graduate from high school, but see him start training to become a paramedic. She plans to go back to school, too. At the end of our conversation, she wanted me to thank the team. I invited her to come to our upcoming team meeting and thank them herself. None of us recognized her. She looked great! She was no longer bright yellow and bloated. She was trim and fit. Her hair was done and she was well dressed. Ann wore a smile none of us had seen on her before. She thanked the team for being ‘angels’ when she was feeling so hopeless and for helping her get her life back. I don’t think we’ve ever had a
85
hospice patient come to the team meeting and thank us in person for not letting them die! We learned important things from Ann’s case. Mainly, it is crucial to identify the patient’s goals of therapy. In her case, she wasn’t ready to die and wasn’t ‘in denial.’ She truly wasn’t ready for hospice. When a patient revokes hospice services, we often feel we’ve not done an adequate job of teaching or caring. Ann was a delightful exception. Acknowledgment
I thank Mrs. Bettina Flores for editorial assistance and Chaplain Janice Hollowell and Social Worker Marie Copher of Team 276 of Sacramento VITAS for their expertise. Address correspondence to: Howard Homler MD, FACP 6660 Coyle Avenue, Suite 250 Carmichael, CA 95608 E-mail: [email protected]
Copyright of Journal of Palliative Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
