Death is a part of natural life; however, society is notorious for being uncomfortable with death and dying as a topic on the whole. Many caregivers experience a level of burden from their duties during end-of-life care. This burden is multi-faceted and may include performing medical tasks, communicating with providers, decision-making and possibly anticipating the grief of impending loss. Similarly, many healthcare providers across the spectrum of care feel unprepared to provide end-of-life care or communicate with patients and families about the complex topics related to death and dying. They can attribute this to the fact that during formal education these topics were not discussed or only briefly talked about. It is imperative that patients and families have access to the care and support they require when entering a terminal phase of life. This phase is different for each patient, and the needs may differ for each patient and family, but it is vital for healthcare providers to provide care and support in a way that respects the patient's dignity and autonomous wishes.
According to the Centers for Disease Control and Prevention (CDC) from 2016 in the United States of America, deaths for the leading causes are as follows:
The CDC collects and reports data about deaths in the United States of America annually. By assessing this information, trends can be identified and addressed. New research, process improvement, and community programs can be developed by using this information and the trends of this information.
All causes of death by age in 2016:
The age-adjusted death rate for all ages, by gender per 100,000 population in 2016:
The vast majority of patients who experience a natural death, meaning no medical, life-saving interventions to counter the process, follow a stereotypical pattern of signs and symptoms in the time leading up to death. This time frame is often referred to as "actively dying" or "imminent death." It is important for healthcare providers to be familiar with this process, not only so they know what to expect when providing direct care to patients during this time, but also so they can guide the family in understanding what to expect during this process and providing support as needed.
The timeline for each patient is variable. A patient may experience these signs and symptoms over 24 hours or for longer than 14 days.
Death is the end state of every disease process; however, each disease has a different progression and course. It is important to assess the patient for findings related to their underlying disease process as well as their needs related to the death and dying process.
The self-determination of the patient with capacity must be respected. When the patient can make their own choices, their autonomy must be upheld. It is not the role of the provider to impart their values and beliefs onto patients. Patients' families may experience anticipatory grief and have a hard time fully handling the current situation, and they may want to push their personal choices for the situation instead of respecting their loved one's wishes and choices. As healthcare providers leading family discussions related to these difficult topics, remember to keep the patient's goals in the forefront at all times.
This type of discussion may arise because of the following reasons (but is not limited to):
When gathering information about a patient and about a situation it is important to create a calm environment and allow for the patient and their family to feel comfortable. Give them enough time to answer questions. Ensure that each party's goals have been discussed; the patient's, the family's, and the medical team's.
The evaluation necessary will depend on the individual patient and where they are in their process. It may be appropriate to gather a wide range of laboratory data, radiographic tests and other diagnostic studies for the patient. It may also be appropriate not to order anything at all for a patient if that is in line with their goals for quality of life.
The primary goal in treatment for patients is alleviating suffering. Hospice care and palliative care are often confused. Hospice care is the term given to the care provided when a patient is given a prognosis of death within 6 months, and they do not pursue curative treatments. They focus on improving the quality of life which can mean many things. Palliative care can be incorporated into the plan of care at any time for any patient who is experiencing suffering and wants to ease that suffering without directly treating the cause of that suffering. Someone may use palliative care in addition to curative treatments. Suffering may have many forms and the care provided should be multi-disciplinary. Some areas that may be addressed are spiritual with chaplain services; caregiver fatigue with community resources or a social worker; physical symptoms such as pain, nausea, constipation with a multimodal approach; and even a palliative care team leader to coordinate all the moving pieces and keep the family and patient aware of what is happening. It is important to establish a treatment goal together with the patient and family and understand that this goal may evolve.
It is important to identify how to know death has occurred and to educate the family of a patient who may be actively dying. This is especially important if the patient is choosing to die at home.
A developing topic in palliative and hospice care is that of assisted death. A handful of countries have legalized the practice which includes the patient filling a prescription from a provider for a lethal dose of medication after the appropriate screening. In the United States of America, California, Montana, Oregon, Vermont, and Washington have laws that allow for terminally ill patients to choose assisted death if appropriately screened.
Most people will die in the hospital; however, most Americans report they would not wish to die in the hospital if they could choose. Days spent at home is an important patient-centered outcome. When reviewing data of community-living older people, days spent at home in the last 6 months of life did not differ by age, sex, or race/ethnicity but they were significantly lower for patients suffering from organ failure and highest for sudden death and cancer.
Talking about death and dying is an important element in the treatment and care of patients and families. It is important for the healthcare provider to be comfortable in engaging with this type of discussion not only during the terminal phase but also in the early stages of a grave prognosis or when broached by a patient. It is crucial, as a healthcare provider, to self-reflect on one's emotional thoughts and feelings regarding death and dying, in general, and how the topics relate to each patient. It is normal to have strong feelings. Identify those feelings. Talk with a colleague or keep a personal journal. It is helpful to role play difficult discussions before having them and reflect on the emotions. Addressing those emotions before encountering the patients and their families will allow the healthcare provider to be fully present for that patient and their needs.
As mentioned before, the primary cause of death for ages 1 through 44 years in the United States of America is unintentional injuries. This causes a complicated grief situation for the family due to the swiftness and unexpectedness of the situation. Ensure to provide resources and be prepared to repeat information as the family may experience the first stage of grief, denial, and not retain what was discussed in your meeting. If the second stage of grief, anger, is present, and practitioners should not take anger directed toward them personally. The family will have a unique grief experience. Provide support as they need it.
Conflicts may arise when a patient's wishes do not match with a family member's wishes or when a patient wants to continue treatments that the medical team deems futile. In such situations, it is advisable to hold a number of discussions to ensure that all parties have the same information and understanding. An ethics committee may need to become involved if resolution cannot be reached.
After having a discussion with patient and family and identifying their needs it may be appropriate to consult the palliative care team, chaplain or spiritual services, social worker, pain management team, dietician, occupational therapy, physical therapy, community resources, and/or mental health professionals.
Continuity is important. Discussions should take place often and should not contain too much information. It is important to ensure that each party understands the information delivered in each session. A good technique is to Ask/Tell/Teach/Ask. Ask the patient or family member what they understand about the topic to be discussed to have a baseline for their knowledge. Then you can Tell them the new information or Teach them the new skill. Finally, Ask them to repeat back what you told or taught them in their words.
Generally accepted actions for care in the dying patient:
Standardizing clinical education on how to discuss death and dying among healthcare providers opens the conversation for patients and their families to palliative care and how to best care for their loved ones. Palliative care is underused which may be due to the stigma related to giving up fighting one's illness or the stigma related to death in our culture. When healthcare providers are more comfortable with this topic, patients and their families are the beneficiaries. The multi-disciplinary team can provide higher quality holistic care.