Build (and Maintain) Your Foundation: Re-Examining End-of-Life Symptoms

We can all appreciate the importance of a strong, sturdy foundation to build our houses and other structures. Building and maintaining foundations are critical elements to success. The same principle holds true for hospice clinician skills. Building a foundation of knowledge and proactively maintaining that foundation is imperative for professional and personal growth, as well as outcomes for the vulnerable patients we serve. The foundation of hospice care is comfort, including the management of symptoms.

Whether you are a clinician new-to hospice or a seasoned hospice clinician, the symptoms our patients experience can prove complex and how they develop throughout the dying process can be unpredictable. That’s one reason many hospices choose to include a hospice comfort kit (e.g. the Enclara ComfortPak®) to maintain ready access to bedrock hospice medications that palliate symptoms, primarily pain, fever, constipation, nausea, vomiting, excessive secretions, and anxiety. These symptoms can emerge or worsen in a matter of hours and can be extremely distressing for patients and their caregivers. Timely and effective symptom management is foundational to caring for patients in hospice which is why it is regularly review and expand our knowledge. Have you noticed changes in the demographic characteristics of patients electing hospice services? You may be wondering how these changes affect symptoms.

Changes in hospice primary diagnosis on admission over time

The National Hospice and Palliative Care Organization (NHPCO) has compiled and published a Facts and Figures report since 2007. Using this data, let’s look to see how hospice patient diagnoses have changed over time. Data was reviewed and extracted from the 2007 report, the 2013 report and the 2023 report, published in December 2023. Taking into consideration some differences in how the data is reported, mainly the use of ICD-10 data for the 2023 report, we can see that cancer diagnoses make up a smaller percentage of the primary diagnosis at time of hospice admission in 2023 compared to 2007 and that Alzheimer’s dementia and cardiovascular diagnoses are more prominent. Would we expect to see different symptoms with patients entering hospice due to chronic disease instead of cancer?

Primary Diagnosis 2007 Report 2013 Report 2023 Report
Cancer 41.3% 36.5% 24%
Non-cancer 58.7% 63.5% 76%
Heart Disease 11.8% 11.2% 29%
Heart Failure Not reported Not reported 8%
Circulatory Not reported Not reported 21%
Debility 11.2% 14.2% not reported in top 20
Dementia 10.1% 12.8% 24%
Lung Disease/Respiratory 7.9% 8.2% 10%
Respiratory disease Not reported Not reported 6%
Chronic Airway Obstruction Not reported Not reported 4%

Table adapted from NHPCO Facts and Figures reports 2023, 2013 and 2007

The average length of stay (LOS) has also changed over time.

Length of stay 2007 Report 2013 Report 2023 Report
Average LOS 61 days 71.8 days 92.1 days
Median LOS 20 days 18.7 days 17 days
Cancer Average LOS 42.4 days Not reported 51 days
Non-cancer 66.1 days Not reported Not differentiated
Heart Disease 61.8 days Not reported 104 days
Debility 69.3 days Not reported Not reported
Dementia Average LOS 79.6 days Not reported 155 days
Lung Disease/Respiratory 61 days Not reported Not reported
Chronic Obstructive Pulmonary Disease Not reported Not reported 140 days

Table adapted from NHPCO Facts and Figures reports 2023, 2013 and 2007

The data clearly show that not only are non-cancer diagnoses comprising a larger percentage of primary diagnoses on admission to hospice, non-cancer primary diagnoses have almost doubled their length of stay from the 2007 report to the 2023 report.

Research evaluating prevalence of symptoms within 2 weeks of dying

Even with longer stays, a patient’s final weeks can present various challenges for which peer-reviewed evidence can be hard to come by. However, two published articles provide an important window into this seldom-documented area. One article, published in 2012, was a systematic review of the literature published between 1996 – 2012.1 The second article, published in 2016, describes results from a cohort study using data collected from The Palliative Care Outcomes Collaboration (PCOC) in Australia.2 The PCOC is a national program funded by the Australian government which aims to support improved outcomes for palliative care patients. While each study had limitations and some review differences, both published the top seven physical signs and symptoms observed/reported during the last two weeks of life, which are summarized below in order of prevalence.

Kehl 2012   Clark 2016
Symptom Prevalence Rank Symptom Prevalence
Dyspnea 56.10% 1 Nausea 90.90%
Pain 52.42% 2 Difficulty sleeping 86.30%
Respiratory secretions 51.40% 3 Appetite problems 84.00%
Confusion 50.07% 4 Bowel problems 81.00%
Fatigue 47.30% 5 Fatigue 66.80%
Incontinence 38.28% 6 Breathing problems 63.10%
Anorexia 36.16% 7 Pain 52.70%

Do any of these symptoms surprise you?

Cancer versus non-cancer

It is important to point out that in the Australian study, 75% of the 19,000 patients studied had primary diagnosis of cancer and 70% of the patients were in a palliative care unit while 23% received hospice services at home. Why is this information important? There is a body of evidence differentiating symptoms at end of life experienced by cancer patients disproportionately compared to non-cancer patients at end of life, and differences in symptoms between types of primary cancer.

A more recent study published in 2022 in the journal Supportive Care in Cancer analyzed 2131 patients diagnosed with cancer from Japan, Korea, and Taiwan to determine the prevalence and severity of symptoms during the last days of life. Investigators observed in digestive cancers, lower extremity edema was the most prevalent symptom while fatigue and ascites were the most severe. For patients with lung cancer, increased respiratory secretions was the most common symptom, while dyspnea was the most severe. This study also reported that unconsciousness occurred in 37% of all the patients.3

There is a general understanding that pain of malignancy is different than non-malignant pain. We know not all pain is the same, hence, somatic pain versus neuropathic pain. Knowing and understanding the details and mechanisms can help us to select the most appropriate medications to address the mechanism of the symptom. A good example is using methadone instead of morphine for neuropathic pain.

Delirium is the most common mental disorder among dying patients, occurring in up to 90% of patients with cancer in their final weeks of life.4 Armed with this type of information, we can establish plans to proactively educate families about delirium and be more successful managing delirium symptoms. It’s like studying well before taking a test so you aren’t up all night cramming the night before.

Complications of chronic disease may introduce “new” symptoms

Change is happening. According to the 2013 NHPCO report referenced, “When hospice care in the United States was established in the 1970s, patients with cancer made up the largest percentage of hospice admissions. Today, cancer diagnoses account for less than half of all hospice admissions.”

As the NHPCO data shows, more patients with chronic disease are electing hospice services. Chronic disease can be accompanied by a host of new or worsening symptoms and side effects due to disease progression and changes in the body’s ability to metabolize medications. Patients with longstanding chronic disease are often admitted to hospice with complicated medication regimens prescribed over many years by several different providers. Do you have the experience to recognize potentially new symptoms or differentiate between symptoms and side effects or adverse effects of one or more of the many medications patients have upon admission to hospice?

Your Enclara Pharmacia family invites you to explore our resources for education on symptom management, identification of adverse effects of medications and other topics. Let’s take some time together to build and water our knowledge and skills foundations.

Further Reading


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  1. Kehl, Karen A, and Jennifer A Kowalkowski. “A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life.” The American journal of hospice & palliative care vol. 30,6 (2013): 601-16. doi:10.1177/1049909112468222
  2. Clark, Katherine et al. “Physical Symptoms at the Time of Dying Was Diagnosed: A Consecutive Cohort Study To Describe the Prevalence and Intensity of Problems Experienced by Imminently Dying Palliative Care Patients by Diagnosis and Place of Care.” Journal of palliative medicine vol. 19,12 (2016): 1288-1295. doi:10.1089/jpm.2016.0219
  3. Hiratsuka, Yusuke et al. “Prevalence and severity of symptoms and signs in patients with advanced cancer in the last days of life: the East Asian collaborative cross-cultural study to elucidate the dying process (EASED).” Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer vol. 30,6 (2022): 5499-5508. doi:10.1007/s00520-022-06969-9
  4. Ganzini, L.. (2007). Care of patients with delirium at the end of life. Annals of Long-Term Care. 15. 35-40.