32.3 Assessment

Assessment for End-of-Life Care

The initial assessment for a new patient is a vital component of ensuring the patient’s directives are followed during their end-of-life care. Not only is the nurse conducting a physical assessment, but they are also assessing the patient’s final wishes and the family’s dynamics and communication style. Including the family during end-of-life conversations is crucial so they are also aware of their loved one’s wishes. The nurse must be observant and detail-oriented and initiate open-ended questions to formulate an individualized plan of care aligned with the patient’s directives.

Each assessment is different, and the process of gathering information needed for the patient’s comprehensive plan of care will be ongoing. With each follow-up visit, the nurse will continue to gather additional information that will likely necessitate changes to the initial plan of care. Topics of conversation with the patient and family during the initial assessment can be found in Table 32.5.

Expected Physiological Changes

Physiological changes will vary in a palliative care patient compared to a hospice patient with an anticipated life expectancy of six months or less. However, both palliative care and hospice patients seek end-of-life care to reduce or relieve their symptoms and maintain their quality of life and dignity. The care provided is dependent on which stage of the end-of-life process each patient is in.

Not everyone who is nearing death experiences pain, but it is a common symptom of both patients receiving palliative care and hospice care. Pain can be draining and cause irritability, making it difficult to communicate with the patient. For a patient experiencing confusion, dementia, or a decreased level of consciousness, it may be difficult for them to express their pain level. Clues to watch for may include moaning, difficulty sleeping, or increased agitation or crying; patients in pain may also guard a specific site or extremity. It is also important to note that it is easier to treat pain at the initial onset, before it becomes extreme.

Another symptom that may be common in both populations of patients is shortness of breath or a feeling of breathlessness. The discomfort of not being able to catch one’s breath may also lead to increased anxiety and agitation. Interventions that may help reduce shortness of breath include elevating the patient’s head, opening a window, or using a fan to circulate air in the room. Patients with a respiratory diagnosis may have prescribed medications or therapies, such as an inhaler, nebulizer breathing treatments, or supplemental oxygen.

As a person nears death, their breathing pattern will eventually change to Cheyne-Stokes breathing. This is a breathing pattern that may alternate between slow, heavy breathing and shallow, rapid breathing, with possible intermittent delays (apnea) between each breath. The patient may also develop a noisy type of breathing sometimes called a “death rattle.” While this may be alarming to the family, it usually is not upsetting to the patient. However, repositioning the patient will sometimes help, as will administering certain medications.

Digestive problems can become a common issue for both palliative care and hospice patients. Constipation is quite common for patients with decreased fluid intake; it is also an associated side effect of pain medications. Nausea, vomiting, and loss of appetite are also common at the end of life, and treatments will vary depending on the cause. For patients with decreased appetite, it might be helpful to offer favorite foods or serve frequent, small meals rather than three large meals each day. Offering a high-calorie drink with a meal, such as brand names Boost or Ensure, may also be helpful. If the patient is weak or tired, the caregiver might find the patient is willing to eat if they feed them. It is important to note that a dying patient should not be forced to eat. Going without food and water can be unsettling to the family, but it is not painful for a dying patient.

Time of Death

Often family members will ask how much time their loved one has left. It can be difficult to answer this question because each patient and the associated disease processes are different. However, as the end of life draws closer, symptoms such as decreased appetite, decreased fluid intake, decreased urine output, decreased level of consciousness, increased temperature, and changes in breathing pattern will be observed. It is important to discuss these changes with the family so that they are not alarmed when they occur. Education by the nurse can truly make a difference in decreasing the panic experienced by a family as they watch their loved one go through the stages of dying.

Additionally, it is important to prepare the family in advance for what they need to do if their loved one passes without a hospice caregiver present, especially if the patient has elected to pass at home. While family members may instinctively want to call 911, they should instead immediately call the on-call number of their hospice agency so that the nurse can come to their home to conduct the pronouncement of death, assist the family with the funeral home process, and provide comfort, compassion, and support.

Nurses are an invaluable support for the family of a deceased person. Simply being available to listen to the family is a crucial part of healthy grieving and coping. The nurse will answer questions or concerns about the circumstances surrounding the death and preparations for viewing the body, as well as assist in helping to contact support people such as the coroner, clergy, or relatives. There may also be times when the nurse assists the family with decision-making regarding a funeral home, transportation, and removal of a loved one’s personal belongings. Utilizing sensitive, interpersonal skills at this time is essential.