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.

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Case:

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.

Discussion


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.

References:
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.

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Case:

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.

Discussion

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.

References:
1. Lynn, J. Serving patients who may die soon and their families. JAMA 2002;285: pp. 925-932.

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