Showing posts with label spirituality. Show all posts
Showing posts with label spirituality. Show all posts
Sunday, March 13, 2011
Pallimed Case Conferences (cases.pallimed.org) is closed to comments and new posts as of April 25, 2013.
This site will stay online as an archived source, but will no longer be updated.
For active posts on these cases and new cases go to www.pallimed.com.
This case is now posted at Pallimed.
This case is now posted at Pallimed.
By Robert Arnold, MD
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
Vol 11, No. 2 - February 2011
Case: The patient is a 75-year-old man who presented with a severe headache and syncopal episode. His past medical history is remarkable for diabetes, hypertension, hyperlipidemia and an MI in 2009. His family brought him to his local emergency room where it was noted that he had a blown right pupil, and CT scan revealed a large subarachnoid bleed. He was intubated and life flighted to the hospital. There he was seen by neurology and neurosurgery, and it was determined that he was not a surgical candidate. Over the next three days he had little neurological improvement, and after meeting with the family it was decided that he should be made comfort measures only. He was extubated and 24 hours had stable vital signs, although he was still comatose. The neurology and neurosurgery team are unclear about what should happen next or about the topics that need to be discussed with the family.
Discussion: Deciding to focus only on comfort is a major transition point for patients, families and health care providers. After making this decision, most families are not sure what comes next. They look to health care providers to reassure them that they are doing the right thing and to ensure that their loved one does not suffer and that they are prepared for the next few days. The following questions should guide one’s action after a patient is made CMO:
1. Are the patient’s symptoms adequately treated/prevented?
UPMC Health System has developed a comfort measures only order sheet in order to optimize symptom management in CMO patients. (see order on demand). It reminds clinicians that:
a. All medications and laboratory tests that do not promote comfort should be discontinued.
b. Most patients near the end of life are not awake enough to tell us when they have symptoms. Instead, clinicians should treat nonverbal signs such as rapid respiratory rate (>24/minute), grimacing, moaning, and restlessness presumptively as signs of discomfort or shortness of breath.
c. The appropriate medications to treat pain or shortness of breath are opiates.
To promote rapid control of symptoms, prn opiates can be titrated rapidly (every 15-30 minutes for iv dosage and 60 minutes for oral opiates.) An infusion may be started if the patient has active symptoms requiring several boluses.
d. Terminal delirium is treated using benzodiazepines.
e. The only evidence-based treatment for secretions, or “the death rattle,” is glycopyrrolate.
2. Does the family want information about what they are likely to see as their loved one dies?
Most families do not have a great deal of experience with death and dying. It is appropriate to ask them if they would like to hear what they are likely to see over the next hours/days. This information may decrease their fear of the unknown and reassure them that their loved one is “on the right trajectory” and not suffering. For example, one can tell families that as patients die it is normal that: 1
a. They are less responsive and sleep most of the time. Hearing may persist, however, and thus families should feel free to talk to their loved one.
b. They eat and drink less. This is not uncomfortable and good mouth care relieves any thirst the patient may have.
c. Their urine output will decrease, and their hands and feet may become cool.
d. Their breathing may become irregular with periods of apnea.
e. They may begin to “gurgle.” This is not uncomfortable to the patient but can be distressing to families who are worried that their loved one is “drowning.” Drawing an analogy to snoring may be helpful.
Finally, families often want to know how long their loved ones will live. This is an extraordinarily difficult question because of our limited ability to prognosticate the exact time of death.
(Our ability to predict the time of death is no better than our ability to predict the time of birth–we can set boundaries but not determine exact times). Acknowledge your uncertainty, and then give your best judgment–whether hours to days or days to a week or two. Asking the family if they have any specific concerns is often helpful.
3. Does the patient or family have religious traditions that the health care team should be aware of?
Ask the family whether there are any spiritual or religious traditions that are important to them or their loved one. In Western Pennsylvania, the most common tradition one needs to be aware if is Catholic need for Sacraments of the Sick prior to death. The chaplaincy service at many hospitals is available 24/7 to meet with families and provide support.
4. Is there anyone else who needs to come and say goodbye?
It is useful to ask families whether there is anyone else who would like to say goodbye to their loved one. In addition, families are often unsure what or how much to tell children about their loved one’s dying or whether to let them see them. Asking about this issue allows the family to express their discomfort and ask questions. This is a complicated topic about which social workers often have particular expertise.2
5. What dispositional issues should be discussed with the family?
There are three general options for patients who have been made CMO:
a. The family may wish to stay in the hospital, either with or without hospice. Given that roughly 70% of patients die within 24 hours of having life sustaining treatments stopped in the ICU, this is a reasonable option for the first day. Staying in the hospital for longer periods may not be the best option as the staff have competing responsibilities, hospitals are not set up to focus solely on comfort, and many hospitals have a 2-3 day time limit for in-hospital hospice.
b. For patients who have symptoms and are actively dying, the most appropriate location may be an inpatient hospice unit (either a stand alone unit or located in a long term care facility). These units are staffed by hospice nurses, social workers, and physicians and provide excellent palliative care as well as attention to families’ psychosocial and religious needs. There are a number of these units within Western Pennsylvania.
c. Taking the patient home with hospice may also be a good option for families, provided they have enough support and are willing to have their loved one at home. It is important to remember that when a patient is at home, hospices provide roughly 2-4 hours of care a day depending on the patient’s needs. Thus, the family needs to understand and be willing to provide basic comfort care for their loved one (with direction and guidance from the hospice).
Which options are available and will fit the patient/family needs will vary depending on the patient’s clinical status, the insurance, and family situation. Care managers and social workers in most units are knowledgeable about these issues and can help guide the family about the appropriate choice given their values. Given this, it is important to have them meet with the family shortly after the patient is made CMO. In difficult or complex cases, the palliative care social workers are available for consultation and help.
References:
1. The palliative care service can provide teams with informational brochures that describe the dying process.
2. The palliative care service has reading material that they can provide to the primary service to give to families.
Sunday, March 13, 2011
Monday, April 20, 2009
Pallimed Case Conferences (cases.pallimed.org) is closed to comments and new posts as of April 25, 2013.
This site will stay online as an archived source, but will no longer be updated.
For active posts on these cases and new cases go to www.pallimed.com.
By Rev. Dale Anderson, B.A., M Div.
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
Vol 9, No. 1 - March 2009
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.
References:
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
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Monday, April 20, 2009
Thursday, November 13, 2008
Pallimed Case Conferences (cases.pallimed.org) is closed to comments and new posts as of April 25, 2013.
This site will stay online as an archived source, but will no longer be updated.
For active posts on these cases and new cases go to www.pallimed.com.
By Rev. Carol Henley, M.Div
Originally posted at the Institute to Enhance Palliative Care, University of Pittsburgh Medical Center
Vol 8, No. 8 - September 2008
Case:JD is a 66-year-old African-American female with cardiomyopathy and pulmonary hypertension who has been in and out of the hospital for the past two years. She had biventricular assist devices placed in August, 2007. Since then, she has experienced numerous setbacks and subsequently has been on and off the heart-lung transplant list. Most recently, she went to the OR to have her current LVAD replaced with a smaller unit. The procedure was aborted.
JD is divorced with no children. Prior to hospital admission, she lived alone, independently, in a one-story home. A supportive brother and sister live nearby. She is very sharp, speaks her mind, and has no patience for what she perceives as incompetence or “stupidity.” She expects staff to communicate with her directly and has no tolerance for ambiguity, mixed messages or superficiality. She has alienated several of the staff who don’t meet her expectations.
Over the past couple years, I have visited JD numerous times. In my first visit, she told me where to sit and told me to read certain passages of Scripture to her. (She has taught adult Bible study and has been very active in her church). I went along with her request (i.e., “order,”) and we actually had a stimulating theological discussion. Our visit ended with prayer. After this first visit, she no longer told me what to do. In subsequent visits, she shared her life story. I found that gently kidding around with her diffused her intensity. We spent many visits with her telling me about her life from childhood on, and we’ve shared much laughter. I enjoyed celebrating with her those memories that gave her joy.
In the last few months, her emotional ups and downs have become more pronounced. She was focused on getting a heart-lung transplant, which turned out not to be an option. She faced a surgery with a questionable predicted outcome, knowing she might die on the operating table. That surgery ended up being aborted. I have seen her at all-time emotional lows as well as in periods of bouncing back. Spiritually, she says she knows that God is with her; she has “no doubts” about that. She also says she must make all decisions, including life and death decisions, on her own – without God’s help.
Intervention:
The anchor in all my visits with her is prayer—prayer for guidance for her in decision making, prayer that lifts all her specific concerns and joys to God. We always hold hands in prayer, which she anticipates and appreciates. The healing aspects of this relationship are consistency and love. In the time we spend together, JD has shared precious, sometimes outrageously funny memories of her life. I have lifted up these memories to God in prayer with her, sometimes in a humorous way. My hope is that rather than compartmentalizing her spirituality she will allow God more and more into her decision making, that she will let God carry the weight of her burdens. This seems to be difficult for her, since she is so fiercely independent.
More and more, she seems now to be dealing with the prospect of her earthly life ending. While she remains trapped in a failing body with future prospects dim, she is now looking at her life with a sense of “well done, thou good and faithful servant” (Matthew 25:21) which is the ultimate healing.
Discussion:
Addressing quality of life is essential for patients with prolonged hospital stays. Patients on LVADS or BIVADS are physically restricted. While the body may be restrained, the mind is free to roam. Well-being must be viewed holistically, with emotional and spiritual needs being addressed. One researcher found that patient coping strategies include family support, religious convictions, and diversional activities, and that best way to support these patients is to establish a trusting relationship, foster independence and incorporate humor into their care. (Savage)
References:
1. Savage, Laura, RN, MSN (2003) Quality of Life among Patients with a Left Ventricular Assist Device: What is New? AACN Clinical Issues 2003 Feb. 14 (1) pp.64-72.
2. Savage, Laura, RN, MSN (1999) Life With a Left Ventricular Assist Device: The Patient’s Perspective American Journal of Critical Care Vol. 5, No. 5, pp. 340-343.
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Thursday, November 13, 2008
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