Systic fibrosis is an inherited autosomal recessive disease in which abnormally thick mucus affects the reproductive, gastrointestinal, and respiratory tracts. Cystic fibrosis causes respiratory disease, characterized by chronic infection, obstructive airway disease, and progressive decline in lung function. Death is most commonly the result of respiratory failure. The life expectancy of patients with cystic fibrosis has increased to the mid-30s as a result of advances in treatment. Adult palliative care providers will be caring for more patient with cystic fibrosis as life expectancy of these patients continues to increase.
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Making the Right Decision – Ethical and Legal Considerations (Reading & Sharing re: End-of-life)
Scope and Standards of Practice – End of life Care
- Structure and processes of care: the composition and qualifications of the interdisciplinary team and define how the team should collaborate with patients and families.
- Physical aspects of care: management of physical symptoms such as pain, fatigue, anxiety, and others.
- Psychological and psychiatric aspects of care: assessment of the psychosocial needs of patients and families. the requirement for bereavement support is included in this domain.
- Social aspects of care: focus on leveraging family strengths and social support mechanisms to alleviate family stress.
- Spiritual, religious, and existential aspects of care: emphasizes the roles of the members of the interdisciplinary team, especially the chaplain, in recognizing and addressing spiritual and existential distress. Specifically, the competency of all team members in understanding and supporting the religious practice preferences of patients and families is stressed.
- Cultural aspects of care: describes cultural competence and defines processes for the provision of culturally sensitive care.
- Care of the patient at the end of life: Highlights the importance of providing multidimensional interdisciplinary end-of-life care for patients and their families, which includes educating them and building them through the dying process.
- Ethical and legal aspects of care: addresses advance care planning, ethics, and legal aspects of care. The role of the interdisciplinary team in broaching end-of-life conversations and documenting patients’ preferences is stressed. Consultation with ethics committees and legal counsel is also emphasized.
Mechanical Ventilation (Reading & Sharing)
The clinical applications of ventilation and the use of specific modes during the acute stage of illness focus on protecting the lung and improving the patient outcomes.
Acute respiratory distress syndrome (ARDS), the most severe presentation of acute lung injury, results from an acute insult to the body that may be direct or indirect (pneumonia vs sepsis). The release of mediators and a host of other toxic substances affect the alveolar- capillary permeability adversely and result in a noncardiac pulmonary edema. Pathology includes decreased compliance, shunting, and refractory hypoxemia. No definitive treatment, but the therapy focus on managing the underlying condition and on supportive mechanical ventilation.
The two most common types of ventilations:
Continue reading “Mechanical Ventilation (Reading & Sharing)”Death Rattle and Anticholinergic Medications
Death rattle – as patients near death, they are unable to cough to clear secretions that begin to pool in the oropharynx and bronchi, resulting in rales (“death rattles”). Because the sound is often distressing to family members, an anticholinergic (glycopyrrolate or atropine) may be given subcutaneously to relieve respiratory distress. A hyoscine hydrobromide transdermal patch is also available, but action is slower, 12 hours compared to 1 minute for injections. Risks associated with anticholinergics include xerostomia (dry mouth), increased sedation, and increased delirium. Elevating the head of the bed or turning the patient to the side may also relieve rattling. Patients normally stop taking fluids as they near death, resulting in dehydration and drying of the mucous membranes of the mouth. The death rattle also begins to lessen.
Palliative care is a form of specialized medical care which aims to optimize the quality of life and alleviate the suffering of patients through early identification and treatment of new symptoms along with management of those that prove refractory.
Excessive secretions can cause the frequently noted ” death rattle” in patients that are actively dying. This is caused by relaxation of the oropharyngeal muscles leading to a pooling of secretion in the throat. While it is typically not distressing for the patient, it does often make family members and other visitors uncomfortable. Anticholinergic agents, especially sublingual atropine drops, can be administered to assist in secretion reduction. Anticholinergic agents have multiple side effects, including decreased/ absent bowel sounds, decreased sweating, hot skin, and mydriatic pupils (dilated pupils).
The Four Different Levels of Hospice Care
The Medicare Hospice Benefit provides for four different levels of hospice care, depending on the needs of the terminally ill patient.
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