Dying is a natural process accompanied by declines in function, including neurocognitive, cardiovascular, respiratory, and muscular function.  This process was examined by researchers with regard to cancer patients, and their findings are outlined in this article.

The process of dying varies greatly, and can last up to several weeks in some cases. Actively dying or forthcoming death constitutes the last week of life, and has distinctive clinical signs that are detailed in this article.

The expression of clinical signs differs significantly among patients, but the more of these clinical signs that are shown within an individual, the more likely death is near.

Signs of Active Dying

The determination of a patient transitioning to imminent death is important, so that clinicians can help educate patients and families about the natural dying process.  Furthermore, this helps to inform their necessary decision-making as well as prepare the patient and family for death as much as possible.

Additionally, the care individualized plan is to be updated in order to reflect any changes in the patient’s status, and should include any necessary clinical visits. Please note that a higher level of care may be necessary in specific circumstances of crisis, or symptoms that are not being controlled by initial treatments.

The chart below shows median times that were identified in a study with cancer patients but can be generalized to other causes of death (i.e. heart disease, advanced lung disease, sepsis, and dementia). The following list is not exhaustive but includes some of the more common symptoms.

Link Between Clinical Signs of Dying and Impending Death

There is a direct relationship between the amount of clinical signs of dying and death:

• Patients with 2 clinical signs of dying had a 40% chance of dying
• Patients with 8 clinical signs of dying had more than a 80% chance of dying

The research showed that the more existing clinical signs of death there are, there is a need for an update to the care plan which should include the appropriate interdisciplinary visits.  Ultimately, the process of a natural death results in clinical signs of dying where the more signs that are present increases the likelihood of death.

Involvement of Hospice Interdisciplinary Teams During Clinical Signs of Dying

When clinical signs of dying arise, the hospice interdisciplinary team commences an update to the care plan that will include:

• Updating the appropriate interdisciplinary team visits
• Education on the dying process for the patient and family
• Adjustments to or implementation of medications
• Ensure that the appropriate medical equipment is in place 

Below, the hospice team roles are described, as they each provide assistance and support in ways that are specific to their discipline and training.

Nurse/nurse practitioner/physician:

• Discussion regarding the cessation of non-advantageous or troublesome treatments
• Assure medications and necessary equipment are available to manage symptoms
• Provide education to the family on utilization of equipment, and explain physiologic changes they may be able to recognize that are associated with the dying process

Social worker/spiritual care coordinator/chaplain:

• Assist patients and families with exploring and expressing their feelings and navigating their relationships
• Actively participate in the review of life, including the act of searching for meaningful contributions
• Facilitate life closure, including forgiveness, addressing regrets, being able to say goodbye, and trying to find acceptance with regard to ongoing losses and death overall

Hospice aides/CNAs are responsible for recognizing the clinical signs of death to then communicate them to the rest of the interdisciplinary team, as well as supporting the patient and family through the dying process in any way they can.

References

Hui, D., Santos, R., Chisholm, G., Bansal, S., Souza Crovador, C., & Bruera, E. (2015). Bedside clinical signs associated with impending death in patients with advanced cancer: Preliminary findings of a prospective, longitudinal cohort study. American Cancer Society Journals, 121 (6), 960-67. https://doi.org/10.1002/cncr.29048

Hui, D., Santos, R., Chisholm, G., Bansal, S., Buosi Silva, T., Kilgore, K., Souza Crovador, C., Yu, X., Swartz, M. D., Perez-Cruz, P. E., Almeida Leite, R., Salete de Angelis Nascimiento, M., Reddy, S., Seriaco, F., Yennu, S., Paiva, C. E., Dev, R., Hall, S., Fajardo, J., & Bruera, E. (2014). Clinical signs of impending death in cancer patients. The Oncologist, 19(6), 681-87. 10.1634/theoncologist.2013-0457

Help During a Difficult Time
Hospice care is designed to provide a comprehensive selection of services in order to help patients and families through an extremely difficult time.

Precious Hospice provides coordinated care, and support to patients and their families with a range of options that corresponds to their specific needs. Determined by an individualized care plan, hospice care often begins with the interdisciplinary team providing routine home care, but there are a variety of options available.

The goal is to provide patients and their families with options about how their care is administered, while taking into consideration what their goals of care are and the level support they desire, including clinical, social and emotional support from the interdisciplinary team.

While home hospice is a specialized type of care that focuses exclusively on providing comfort and support for people who are facing a life-limiting illness in the patient’s own home, it isn’t about just seeing to the physical needs of the patient. This type of care is comprehensive, and meant to support the patients and their families.

Precious Hospice offers the following services:

• Assessing and treating symptoms by a highly trained specialist
• Integrating the family’s goals and principles into the patient’s individualized care plan
• Mobilizing healthcare resources to ensure continuity of care
• Guiding patients through the various care settings (e.g. hospital, nursing home, patient’s home, etc.)
• Medical care from physicians
• Pain and symptom management from nurses
• Emotional need management for both the patient and family from Licensed Social Worker
• Daily living and safety support provided by Certified Nursing Assistants
• Religious services and spiritual guidance provided by Spiritual Care Coordinator and/or Chaplain

Older patients with advanced dementia living at home in Israel were evaluated in a study published in the Israel Journal of Public Health Research, and researchers found that hospice care was associated with significant improvements in caregiver burden, perceived symptom management, and satisfaction with care among participants’ families. Older patients with advanced dementia were eligible for the research study if they were regarded as stage 7 or higher on the Global Deterioration Scale, were referred to hospice, and already had the assistance of a full-time caregiver.

The researchers hold that this research can assist in not only improving awareness that dementia is a terminal illness, but also that hospice and palliative care can be extremely beneficial to older people with advanced dementia.

The existing home care of the participating patients was augmented with hospice care. For a maximum of six months per patient, a specialty trained physician, nurse, social worker and spiritual care provider met with families and were available to them at all times, and families provided evaluations before and after receiving the hospice care.

Of the study’s 20 participating patients:

• Average age was 83.5
• 70% were women
• Multiple chronic comorbidities were present (65% with hypertension; 40% with ischemic heart failure; 30% post-stroke; 30% with diabetes; 15% with COPD; and 15% with cancer)
• Patients had been diagnosed with dementia for an average of 5.6 years

Key Outcomes from Assessments by Families:

In comparing family members’ responses (post-program) to baseline assessments:

• Caregiver burden decreased substantially
• Symptom management improved
• Satisfaction with care increased

Key Outcomes that were Identified by Hospice:

• Although five hospitalizations occurred during the study period, the hospice team identified what they considered to be 33 “prevented” hospitalizations
• An average of 2.1 medications per patient were determined to be unnecessary, and then discontinued

The researchers explained that “all the families mentioned that the program gave them a sense of being supported and that they would recommend it to others,” and that many stated “they felt more comfortable caring for their loved one at home, that suffering had been decreased, and that they learned more about the trajectory of dementia.”

Also, the hospice team was acknowledged for improving the family and patient well-being and reducing caregiver burden for the families who sought support from the social worker and/or spiritual care provider.

Although it is not surprising, given it is difficult to identify elderly patients with advanced dementia who likely have a six-month prognosis, the researchers identified that “thinking of dementia as a terminal illness appropriate for hospice care was a cultural shift.”

While the researchers designate some limitations to their study, they believe it lays an important foundation for further research, stating that the information regarding the impact and challenges of executing a home hospice dementia model will be significantly valuable in the future on an international level.

References

Sternberg, S. A., Sabar, R., Katz, G., Segal, R., Fux-Zach, L., Grofman, V., Roth, G., Cohen, N., Radomyslaski, Z., & Bentur, N. (2019). Home hospice for older people with advanced dementia: A pilot project. Israel Journal of Health Policy Research, 8 (42). https://doi.org/10.1186/s13584-019-0304-x.

Recent Hesitation

Given the aging population in America along with the technological advances in life-sustaining interventions and treatments, several patients will be incapacitated when there is a need for complex end-of-life treatment decisions to be made.  According to experts from The University of Chicago Department of Medicine, the recent emphasis on family-centered care does not change the integral fact that physician recommendations directly influence the decision-making processes of patients’ surrogates.  

According to an article published in the Journal of Pain and Symptom Management, “both the available data and good ethics suggest that physicians should make recommendations to surrogates regarding end-of-life medical decisions for their loved ones as part of the dynamic and interactive process of shared decision-making.”

Although patients have traditionally expected physicians to make recommendations for medical care at the end of life, current concepts of patient independence and surrogate responsibility may have blurred the lines of the issue for some. Recently a trend has arisen where physicians hesitate in making recommendations, out of their concern that they will be considered patronizing.  Additionally, some physicians are not sure if recommendations at the end of life would be openly welcomed by surrogate decision-makers, or if their recommendations are truly an aspect of good shared decision-making.

Evidence

The researchers in the aforementioned study reviewed the empirical evidence from six quantitative studies regarding surrogate and patient preferences surrounding physician recommendations for end-of-life care.  They then evaluated the ethical case for integrating physician recommendations into the care decisions for terminally ill and incapacitated patients.

The researchers concluded that “all [choices] require that the physician communicate an opinion about a medical decision, which is to make a recommendation,” regardless of whether the surrogates and/or patients expressed their preference for who makes the final decision(s).  They reviewed that only 0 – 1.2% of surrogates preferred to make the decision alone.  The data demonstrated that not only did patients prefer surrogates to know their physician’s opinion treatment at the end of life, but most surrogates preferred to be aware of it as well.

With the family-centered approach to end-of-life care, shared decision-making is included, but does not mean that physicians will abdicate the responsibility for medical decisions to surrogates.  Instead, the article explains that shared decision-making allows for a collaborative exchange in which practitioners are able to help families navigate the predictive uncertainty of complicated medical circumstances and life-sustaining options. Surrogates offer their unique knowledge and understanding of their loved one’s values and desires.

Challenges

Shared end-of-lidfe decision-making, however, does constitute possible difficulties that the researchers have identified as the following:

• Prognostication itself can be difficult
• Explaining clinical uncertainty and complicated clinical situations with conciseness and clarity is a further challenge
• Surrogates are often at risk for post-traumatic stress disorder, and therefore, physicians may hesitate to offer their perspective, in an effort to proceed cautiously

The Ethics

With regard to ethics, having a physician’s recommendations included in end-of-life decision-making is justified.  It represents the ideals of independence such as the surrogate having the autonomy to accept or decline the physician’s recommendation, maintaining medical best practices, and contributing to the relationship between the patient and physician.  Furthermore, the researchers conclude that physician recommendations should continue to be the norm for practice in end-of-life shared decision-making with surrogates, as opposed to a lack of evidence or even morally persuasive arguments. 

References

Prochaska, M. T. & Sulmasy, D. P. (2015). Recommendations to surrogates at the end of life: A critical narrative review of the empirical literature and a normative analysis. Journal of Pain and Symptom Management, 50 (5), 693-700. https://doi.org/10.1016/j.jpainsymman.2015.05.004