Tuesday, November 24, 2009
In consideration of the many family dinners that will occur over the next few days of the Thanksgiving holiday, we are hosting (along with several other medical bloggers) a guest post from Engage with Grace and the One Slide Project. This post will stay at the top of this blog from Tuesday the 24th until Sunday the 29th. You can also join the Engage with Grace group on Facebook.
Have a safe and meaningful Thanksgiving!
Some conversations are easier than others
Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.
It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:
Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.
Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.
One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.
Wishing you and yours a holiday that’s fulfilling in all the right ways.
(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )
Tuesday, November 24, 2009 by Christian Sinclair ·
Thursday, May 7, 2009
By Ellen M. Redinbaugh, PhD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
CASE:Mr. J was a 39 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. J had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.
Once Mr. J became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 6 year-old son and 8 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. J with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. J in applying these materials to the conversation he would have with his children.
First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. J to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. J identifying words and concepts about illness and death that his children would understand. Mr. J decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”
Although his message was brief, Mr. J feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. J practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.
The practice helped, but Mr. J still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. J might reassure his children that he’s still going to help them with their homework and read to them every night.
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.
1. Rosenheim, E., Reicher, R. (1985). Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Disc. 26:995-998.
2. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider & L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.
Thursday, May 7, 2009 by Christian Sinclair ·
Monday, April 20, 2009
By Rev. Dale Anderson, B.A., M Div.
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
Case: During a weekly Palliative Care Consult meeting, it was discussed that if D, 53-year-old woman with congestive heart failure, did not receive a heart transplant within several weeks to a few months at the most, she would probably die. I felt led to visit her, even though she was not on my normal unit rounds. On the initial visit, D was welcoming when I stopped by her room. After introducing myself as a Protestant staff chaplain, I inquired about her pain. D told me how uncomfortable she was and how she felt so limited by her physical condition. When I asked how she was coping with any other areas of suffering in her life, her lips quivered and her eyes filled with tears as she told of the burdens in her soul…deep, personal stresses in her life that continued to that very day. She had tearfully vented for about an hour, as I reflectively listened and reassured her that every word was confidential and I was there for her to listen, if nothing else.
After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of D’s death triggered the process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. D was sent home with a VAD long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours D was back in for her heart transplant.
Surgery went very well, and D was out of the ICU with few complications. Yet, once D was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.
Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.
This was a process that was not resolved as in our modern media. It was assisted in by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, D’s family members who realized D’s mortality and took ownership of her suffering and their contribution to the dysfunction in their household.
In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as :) demonstrating No Pain to 10 being Unbearable/Excruciating Pain. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, what ever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”
While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.
1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999
2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine. LICSW. Volume 7 No 2. March/April 2009
Monday, April 20, 2009 by Christian Sinclair ·
Thursday, March 12, 2009
By Tamara Sacks, MD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
CH is a 56-year-old woman with metastatic breast cancer to bone, liver and brain. She is admitted to the hospital with increasing lethargy and a marked decrease in her oral intake. She has also not had a bowel movement for 10 days. Further interview reveals that she has been on a fentanyl patch 75 mcg for months, senna and colace, and hydrochlorothiazide. Her diuretic is stopped and she is placed on intravenous fluids. Except for dehydration, a metabolic work up is unremarkable. Her exam reveals hypoactive bowel sounds, a scaphoid abdomen with palpable mobile masses, and soft stool in the rectal vault. She is disimpacted. No active bowel movement follows despite suppositories. She is also not able to retain enemas. She has increasing nausea and anorexia. Given her inadequate response to a bowel regimen from below and inability to tolerate an oral regimen, she is dosed with methylnaltrexone subcutaneously x1. She has a large formed bowel movement 2 hours later.
Constipation is a well recognized side effect from opioids. Tolerance does not occur. In fact, the dose that can cause constipation is ¼ of an analgesic dose. Opioids exert their constipating effects by decreasing GI motility, gastric emptying, increasing ileocecal valve tone, increasing fluid resorbtion, and decreasing the reflex to defecate.
Methylnaltrexone (MNTX) is a mu receptor antagonist that unlike naloxone does not cross the blood brain barrier as it is a quaternary amine. Naloxone has been used in the past for opioid induced constipation. However, this use has also been associated with opioid withdrawal and decreased pain relief. MNTX was approved for the treatment of opioid induced constipation by the FDA last year. Given its expense, many institutions have tried to limit its use. Our institution has made a Palliative Care consult one of three consultation services that can approve dosing.
The phase three clinical trials that led to approval of MNTX involved patients either enrolled in hospice or as part of a palliative care program, and opioids were thought to be the primary cause of the constipation. They must have been receiving opioids for two weeks and on a stable opioid and laxative regimen for three days.
Enrolled patients had had no bowel movement in greater than 48 hours or had had less than 3 bowel movements the week prior. Bowel obstruction, fecal impaction or other acute abdominal processes were ruled out. In addition, patients with peritoneal dialysis catheters and fecal ostomy bags were excluded. While 80 percent of the patient population had cancer, patients with cardiovascular disease, AIDS, dementia, and COPD were also included. MNTX is administered subcutaneously based on the patient’s weight. After administration of MNTX, greater than or equal to 50% of the study group had a bowel movement within 4 hours. Most patients had a bowel movement within 30-70 minutes. As compared to placebo, the most frequent side effects were abdominal cramping, nausea, dizziness, increased body temperature and flatulence. However, the number of patients who discontinued therapy secondary to side effects was similar to that in the placebo group. No decrease in pain control or signs of opioid withdrawal were noted as compared to the placebo group.
There are many medications and dosage forms that are available for opioid induced constipation. Previously, routes of administration have been oral and rectal. Dysphagia, nausea or decreased mental status can greatly hinder an adequate regimen by mouth. Rectal routes of suppositories and enemas can also be tried. Inability of the patient to participate can limit effectiveness of enemas. In properly selected patients, MNTX may be able to aid in relief of opioid constipation without adversely affecting pain control
1. Thomas, Jay et. al. Methylnaltrexone for Opioid Induced Constipation in Advanced Illness. 2008. NEJM 358 (22): 2332-2343.
2. Yuan, Chun-Su. Methylnaltrexone Mechanisms of Action and Effects on Opioid Bowel Dysfuction and Other Opioid Adverse Side Effects. The Annals of Pharmacotherapy, 2007. 41: 984- 993
Thursday, March 12, 2009 by Christian Sinclair ·
Monday, March 9, 2009
Dear Pallimed Readers,
Thanks so much for joining us here at Pallimed. Last January we had our first annual survey to get some more structured feedback from the readers. (Here are the results from the 2008 Pallimed Readers Survey.) This year we ask you for a few minutes to complete this year's survey. (Last year the survey took less then 6 minutes on average.)
It is even shorter then last year's, since we took out some questions! Blame it on the economy, we cannot even afford more questions this year. Drew, Amber, Amy, Tom and I appreciate your feedback very much.
The survey is open for just one week. Please complete it only once. It is the same survey regardless of which blog (Main, Arts, Cases) you access it from.
We will not sell your information. We pledge not to bombard you with survey pop-ups, or separate emails asking you to finish this. It is a voluntary survey.
We are expecting to provide our readers with some feedback from the survey by the end of March.
Christian Sinclair (on behalf of Drew, Amber, Amy, Tom and Pallimed)
Monday, March 9, 2009 by Christian Sinclair ·
Thursday, February 26, 2009
By Gordon J. Wood, MD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
Mr BT is a 57 year old man with stage IV laryngeal squamous cell carcinoma, status post radiation and chemotherapy who is now thought to have no evidence of metastases or recurrence. He was followed in a palliative care clinic for chronic musculoskeletal pain and was referred to a new palliative care physician when his prior physician left the practice. Upon presentation to the new physician, the patient complained mainly of painful gynecomastia (excessive growth of breasts in a male) without galactorrhea (spontaneous flow of milk from the nipple) for the past several months. Besides some unrelated knee pain, his examination was remarkable only for bilateral tender gynecomastia. He had not undergone any endocrinological lab studies and a recent PET/CT of the head/neck/chest/abdomen/pelvis was unremarkable. Upon review of his medications, the only possible culprit was metoclopramide which had been started approximately one year prior for nausea. The nausea had since resolved but he was still taking the medication since it was prescribed on a scheduled basis. The metoclopramide was discontinued and several labs were ordered in consultation with endocrinology including testosterone, prolactin, TSH, free T4, FSH, LH, estradiol and HCG. Lab workup was largely unrevealing although most, including the prolactin level, were drawn after the metoclopramide was discontinued. Over the several months following metoclopramide discontinuation the patient’s gynecomastia resolved without any recurrence of his nausea.
This case, although relatively simple, is important for two major reasons. First, it reminds us of a rare but significant side effect of a medicine commonly used in Palliative Care. Second, and perhaps more importantly, it highlights the dangers of polypharmacy in the Palliative Care setting.
Metoclopramide is a Dopamine type 2 (D2) receptor antagonist and is used as an antiemetic and prokinetic agent. In addition to these effects, it also reliably increases prolactin levels through its action on the D2 receptor. Dopamine normally inhibits pituitary secretion of prolactin. Metoclopramide administration blocks this inhibition resulting in increased prolactin levels.1 This effect has been used as both a research tool and as a clinical test. Symptomatic gynecomastia from elevated prolactin in patients taking metoclopramide, however, is rare, although it has been reported.2 Galactorrhea has also been reported. In fact, metoclopramide has been used to augment lactation in breast-feeding women.3 Upon serologic testing, prolactin levels will generally be elevated in metoclopramideinduced gynecomastia. Discontinuation of the drug generally results in resolution of the symptoms.
Since metoclopramide is generally considered a first line antiemetic and is frequently used in clinical Palliative Care practice, this case serves as useful reminder of this rare but significant side effect. The equally or more important message from this case, however, is the need for careful medication management in this vulnerable population.4 Going back to Cicely Saunders, one of the guiding principles of Palliative Care is the scheduled administration of medications to provide continuous symptom control. Recent literature reinforces this concept in the management of nausea and vomiting.5 In addition, it is suggested to not only use scheduled antiemetics but to add second and third antiemetics as needed instead of stopping one and starting another. While this method has been shown to provide effective relief of symptoms, it can expose the patient to a high risk of side effects if the practitioner fails to taper the medications after the emetic impulse has resolved. This patient had no recurrence of his nausea with discontinuation of his metoclopramide, suggesting that he could have been spared the development of gynecomastia if the metoclopramide had been tapered earlier.
This case also reinforces one of the most basic but important principles in medicine: symptoms which emerge after initiation of a medication are most likely caused by that medication. Because of the serious and progressive nature of the illnesses encountered in Palliative Care, it can be easy to assume that all clinical deterioration is due to worsening of the underlying disease. This case reminds us of the importance of a solid understanding of medication adverse effects and the need for a constant vigilance for these outcomes. Fortunately for Mr BT, the culprit medication was discovered and the symptoms resolved with discontinuation, thereby allowing him to get back to enjoying his life after what appears to be a very successful initial treatment of his serious underlying cancer.
1. Macullum RW, Sowers JR, Hershman JM, Sturdevant RAL. Metoclopramide stimulates prolactin secretion in man. J Clin Endocrinol Metab. 1976;43:1148-1152.
2. Madani S, Tolia V. Gynecomastia with metoclopramide use in pediatric patients. J Clin Gastroenterol. 1997;24:79-81.
3. Ehrenkranz RA, Ackerman BA. Metoclopramide effect on faltering milk production by mothers of premature infants. Pediatrics. 1986;78:614-620.
4. Bernard SA, Bruera E. Drug interactions in palliative care. J Clin Oncol. 2000;18:1780-1799.
5. Wood GJ, Shega JW, Lynch B, Von Roenn JH. Management of intractable nausea and vomiting at the end of life: “I was feeling nauseous all of the time…nothing was working”. JAMA. 20087;298:1196-1207
Thursday, February 26, 2009 by Christian Sinclair ·
Thursday, February 12, 2009
By Mamta Bhatnagar, MD
A 43-year-old woman, WM was diagnosed with Huntington’s Disease (HD) in September 1996. In 1997 WM stopped working due to disability related to her disease progression. Since 2004 she was living at a skilled nursing facility where her care had been stable until 4 weeks prior when her choreiform movements intensified, her oral intake declined, and she was unable to rest or sleep due to incessant body movements. Several medication changes at the nursing facility were unsuccessful and she was transferred to an inpatient hospice unit for end-of-life care. On exam the patient appeared younger than her stated age and cachectic. She was non-ambulatory. She had flailing involuntary movements of her arms and legs, which made a comprehensive physical examination difficult. Her speech was unintelligible and skin on her arms and legs showed bruises and open wounds that she sustained when she hit any furniture around her. The patient’s husband and power of attorney’s primary goal was to control her movements and allow her to rest.
|Dr. Huntington via Wikipedia|
Brief overview of Huntington’s disease
HD is a neurodegenerative disorder that is inherited in an autosomal dominant fashion so that each child of an affected patient has a 50% chance of developing the disease. Most patients develop symptoms in their forties and fifties. Symptoms are usually a triad of motor, cognitive, and psychiatric issues. The motor symptoms involve impairment in voluntary movements and appearance of involuntary movements called chorea (hence the name Huntington’s chorea). Impairment in voluntary movements results in loss of manual dexterity, slurred speech, swallowing difficulties, problems with balance, and falls. The motor symptoms worsen in the middle stages followed by rigidity in the late stages of the illness. Cognitive symptoms manifest in the patient’s inability to perform complex tasks with loss of speed and flexibility, progressing to global impairment in the later stages of the disease. Psychiatric symptoms most commonly include depression. Patients may also manifest irritability, anxiety, agitation, impulsivity, apathy, social withdrawal, and obsessiveness.
Medications do not alter the progression of HD. Patients are vulnerable to cognitive side effects of pharmacologic therapy. Motor symptoms are usually managed using either neuroleptic agents such as haloperidol and/or benzodiazepines. There are no medications to treat swallowing difficulties or rigidity that occurs later in the disease. Depression is treated with serotonin specific reuptake inhibitors such as sertraline and paroxetine. The mainstay of therapy for HD remains non-pharmacologic management. Padding of furniture and weights on wrists and ankles will help reduce injuries and the amplitude of involuntary movements respectively. As swallowing difficulties progress, the food consistency can be softened and pureed. Eating is usually supervised, and the patient is given time to eat with no distractions. Caregivers should be trained in Heimlich maneuver. Cognitive impairment and difficulties in communication can be eased by giving the patient time to answer and asking closed-ended questions. Establishing routines around the patient and activities that adjust to his or her cognitive level help to decrease anxiety and allow cognitive stimulation. Identifying and avoiding triggers for emotional outbursts and providing family and caregiver supports are measures to help manage behavioral manifestations of the disease.
Average survival time after diagnosis is 15 to 20 years. Disease course is variable, and every patient is unique, which makes prognostication difficult.
Back to the Case
Initial attempts to sit the patient in a padded wheelchair and feed her proved unsuccessful. A trial of phenobarbital was initiated to allow her to rest and monitor response. All furniture was removed from her room. Several mattresses were placed on the floor and padding was applied to the walls. Over the course of 3-4 days the patient’s movements subsided, and she was able to stay awake. Her appetite improved, and she drank shakes. Feeding times were unique; one staff member would hold WM in her lap while the other would feed her. Over a period of 2 weeks, WM thrived. Although she was incontinent for bowel and bladder, she would call out to the nursing staff when she needed care. Her room was decorated with her favorite sport team jerseys and family photos. Her husband visited daily and was able to participate in feeding times, and together they watched sports events on TV. WM’s only medications were oral fluoxetine, laxatives, antacids and phenobarbital. While we initiated our treatment plan to relieve distress and attempted palliative sedation therapy as a means to relieve what appeared to be refractory symptoms at the end of life, the patient’s response was so dramatic that we now planned for her care for the next several weeks at a nursing facility. Our objective was to achieve a smooth transition for WM, and we encouraged nursing facility staff to visit the hospice unit and witness her personal care and feeding. The patient was eventually transferred and has continued to be stable at the nursing facility. She has not required any medication adjustments.
1. Aubeeluck A, Wilson E. Huntington's disease. Part 1: essential background and management. Br J Nurs. 2008;17(3):146-51.
2. Rosenblatt A, Ranen NG, Nance MA, Paulsen JS. A Physician's Guide to the Management of Huntington's Disease. Second Edition. Huntington's Disease Society of America 1999.
Thursday, February 12, 2009 by Christian Sinclair ·
Thursday, January 29, 2009
By Justin Engleka, MSN, CRNP, CHPN
Miss C. is a 28-year-old female with a history of a spinal cord tumor with metastasis to the brain. She was admitted to the hospital for further management of related complications. She had suffered with multiple neurological complications, including paraplegia since 1997. She had endured many procedures, surgeries, treatments, and hospitalizations prior to the Palliative Care Team’s meeting with her on this admission. Her disease had become more extensive. She had recently received chemotherapy, and developed complications likely related to this. When she arrived at the hospital, it was determined that she had suffered an intraventricular hemorrhage. For this reason, she was intubated and placed on the ventilator.
During her hospital stay, she had multiple complicated medical issues: the intraventricular hemorrhage, quadriplegia, infection, hypotension, and delirium. Communication with this patient was difficult and painstaking, but not impossible. Behavioral medicine was recruited to assist with communication efforts and help the family with coping techniques. The Palliative Care Team met with the patient and her family daily to assist them in setting the goals of care. The primary service was an integral part of the communication process. During the previous years of cancer treatments, Miss C. had developed very close bonds with this staff.
Miss C. began to express concerns about the therapies she was receiving. After long, detailed conversations with her, we recommended that some limits be placed on medical interventions such as resuscitation, and blood pressure support. The patient and family agreed. She was successfully discharged to a ventilator facility closer to her family.
But please believe me, if you care, you can’t go wrong…
Death may get to be routine to you, but it is new to me.”
Dealing with the impending death of a patient is perhaps one of the most difficult tasks that a nurse or physician can encounter. For staff who deal with these types of issues on a day-to-day basis, it can become even more distressing. Traditionally, the intensive care units care for the most critically ill patients. Unfortunately, death becomes an inevitable part of the experience. How each staff member deals with that grief and sorrow varies greatly. It is well acknowledged that the death of a loved one under any circumstance is a tremendous loss for that family. Little is written or spoken about the grief and coping of staff who deal with dying patients on a daily basis. This case illustrates that not all patients who die in the hospital are elderly, frail patients who have lived a full life. Understandably, nurses, doctors, and staff would view this case in a different light. For many of us, we see a young, 28-year-old girl who reminds us of our wives, our sisters, our daughters, or ourselves. 28-year-old women are not supposed to die.
This case also reminds us that we cannot endure the stress and grief alone. While it is important to maintain consistent contact with our patients, we also need to know our limits. Traditionally, nurses are caretakers and nurturers. They typically “vent” about these types of cases with their colleagues and managers. It is also nice to know that there are services within our system for patients, families, and staff. Staff should know that they need to take care of themselves, too. Services like social work, behavioral medicine, palliative care, clergy, and family support services are readily available to consult with staff members about their concerns and grief.
1. Reimer, J.C., Davies, B., & Martens, N. (1991) Palliative Care: The nurse’s role in helping families through the transition of “fading away.” Cancer Nursing, 14(6), 321-327. Vachon, M.L.S.,
2. The stress of professional caregivers in Doyle, D. et al eds. Oxford Textbook of Palliative Medicine, New York, Oxford University Press 1998, 919-929.
Thursday, January 29, 2009 by Christian Sinclair ·
Thursday, January 15, 2009
By Linda A. King, MD and Nicole Fowler, MHSA
A 67-year-old man with end-stage congestive heart failure presented to the hospital with worsening respiratory distress and was intubated in the emergency room. Despite a week of intensive efforts, he could not be weaned from the ventilator and remained dependent on intravenous dobutamine for blood pressure support. The ICU staff met with the patient and family to discuss the medical situation and options for care including withdrawal of life support. The patient did not want to continue on long-term ventilatory support nor did he want to die in the hospital. The patient expressed to the care team a strong desire to leave the hospital and to die at home.
A palliative care consultation was initiated to support the patient and family and to assist with a discharge to home. The patient, family, ICU team and palliative care team discussed potential options for discharge and decided on a plan to transport the patient home with ongoing mechanical ventilation and inotropic support. This option allowed the patient to be comfortable at home with his family before removing the ventilator and providing medications for comfort that would likely be sedating. Efforts to carry out this plan were hindered by the reluctance of home care and hospice agencies to participate in this “unusual” and expensive plan that provided little or no reimbursement (i.e. withdrawal of life-support in the home setting while the patient continued on Dobutamine).
Following hours of coordination and planning, the physician from the Palliative Care service and a nurse from the ICU rode home in the ambulance with the patient where they were met by many of the patient’s family and friends and a private duty nurse to support the patient and family. After a few hours of visiting with his loved ones, the patient indicated that he was ready for the ventilator to be withdrawn. Intravenous morphine and ativan were administered until the patient was comfortable, then the endotracheal tube was removed. Additional medication was administered intermittently to maintain adequate comfort and the patient died comfortably at home a few days later. The family expressed their gratitude that the patient’s wish to die at home was achieved.
For many patients facing a life-threatening illness, death at home is viewed as a desirable and even essential element of a “good death.” Patients in the hospital expected to die imminently after the withdrawal of life-support do not typically have this option because of the obstacles and lack of payment incentives for coordinating this type of care. Withdrawal of life support in the home can provide patients and families with the opportunity to achieve their goal of dying in the familiar setting of their own home at a lower cost than the average cost of care in an ICU.
However, in our current care system it requires extenuating circumstances and significant coordination and planning to assure that patients and families are well supported and the patient’s comfort is maintained. When the goals of care shift for seriously ill patients from a disease-specific and curative approach to an approach that focuses on comfort, symptom management and other personal preferences for care (such as wanting to die at home), the health care system is often inadequate and discontinuous. One reason, as in our highlighted case, is that “ownership” for this type of coordination does not exist and few providers (home care and others) are willing to assume this role because most insurance programs (such as Medicare) will not pay. Since most care is reimbursed according to location, it is difficult to provide comprehensive services that meet the changing goals of patients as their disease progresses.
Public policies and financial incentives that encourage and reward hospitals, home care agencies, nursing homes and hospices for seamless care need to be established. Surely to compliment our modern care system and life prolonging technologies we should be able to develop a reliable and sustainable system that also relieves symptoms, honors preferences and supports patients and their families at the end of life.
1. Lynn, J. Serving patients who may die soon and their families. JAMA 2002;285: pp. 925-932.
Thursday, January 15, 2009 by Christian Sinclair ·
Thursday, January 1, 2009
By Erin Hedden, Music Therapy Intern
Ms. Z was a middle-aged Colombian woman with pulmonary hypertension and was awaiting a double lung transplant. Her presenting symptoms included extreme shortness of breath with minimal exertion, tiredness, and chest pain. A palliative care consult was requested for support and symptom management for anxiety and depression. She was also very concerned about her bills. She had trouble concentrating, was unable to watch TV or use her laptop, and was constantly tearful. Through palliative care, a consult was obtained for music therapy. In the context of music therapy, her anxious and depressive symptoms were significantly diminished by using music that was specific to her native culture.
Music therapy has consistently been demonstrated to help alleviate symptoms of anxiety and depression, especially when the implemented music is a type of music that is preferred by the patient. In fact, a study researching the effects of subject-preferred music found that subjects who listened to their preferred music exhibited an increase in positive mood if their pre-music mood was negative. It also found that subjects listening to preferred music maintained a positive mood if the subjects’ pre-music mood was positive (Wheeler 1985).
Since Ms. Z was a Colombian immigrant, there were many times that she had family members and friends with her to both support her and translate some of the more difficult conversations that were in English. Though this author did know rudimentary Spanish, and did successfully implement short phrases, it was the music that became the common language throughout each session.
The first music therapy session was met with much enthusiasm and laughter from Ms. Z’s family and friends. Ms. Z was visibly anxious and nervous as she sat in the corner, but as she began to watch those around her enjoying themselves, her face softened and she smiled from behind her oxygen mask. The two attending interns closed the session having played some of the requested music, but with the momentous assignment to learn many more songs. Countless hours were spent learning songs by one of her favorite artists, Juanes, who is famous in Colombia and other South American and Spanish-speaking countries.
The second session was filled with a myriad of their favorite Spanish songs. They sang every song along with the attending interns, laughing and crying at the same time. Ms. Z was visibly relaxed and at peace. She continued to enjoy music therapy after she got her double lung transplant. Through the implementation of music therapy, her anxious and depressive symptoms were significantly diminished through singing, the use of percussion instruments, and by using her preference of cultural-specific music.
Through singing, she used her lungs—both before and after her double lung transplant. Even when Ms. Z was only able to whisper, she was still stretching her new lungs while “mouthing” the words she knew from memory. It distracted her from the monotony of being hospitalized, from the bills she couldn’t pay, and from her constant medical problems. It fostered a deeper and more meaningful socialization with her loved ones, and helped her to find cultural familiarity within someone else’s culture. Singing also gave her choices: she could participate or watch; she could choose which song she wanted to hear; she could choose which artist she wanted to hear; and she could choose the language with which she wanted to surround herself. It also gave her a sense of ownership and pride that the attending interns learned these songs specifically for her.
Using percussion instruments had its own benefits: it was a less threatening way to participate in the music-making experiences; it gave another series of choices for her to make; and because there was a wide array of South American instruments, it was a physical and tangible connection to her cultural heritage.
Music can help patients to appreciate the beauty and wisdom of their own cultural backgrounds and promote positive feelings within them that can be tapped into when celebrating and coping with life’s highs and lows (Chase 2003). By validating Ms. Z’s culture and bringing it into her hospitalization, music therapy fostered a sense of normalization and familiarity within the hospital walls which to her had previously represented feelings of anxiety and depression.
1. Chase, Kristen M. "Multicultural Music Therapy: A Review of Literature." American Music Therapy Association Music Therapy Perspectives 21 (2003): 84-88.
2. Wheeler, Barbara L. "Relationship of Personal Characteristics to Mood and Enjoyment After Hearing Live and Recorded Music and to Musical Taste." Psychology of Music 13 (1985): 81-92.
Thursday, January 1, 2009 by Christian Sinclair ·