Meredith Swinford, LMSW, Elder Advocate, End-of-Life Guide

UNDERSTANDING THE USE OF OXYGEN AT END OF LIFE IN HOSPICE CARE

Oxygen at the end of life is often misunderstood. In hospice care, oxygen is not used to prolong life, it is used to improve comfort. The focus is not on oxygen numbers, but on how the patient feels and whether their breathing is eased (National Hospice and Palliative Care Organization, 2022).

Shortness of breath, or dyspnea, is a subjective experience. A patient may feel breathless even with normal oxygen levels, while another may have low oxygen levels without distress. Evidence shows that supplemental oxygen does not consistently relieve dyspnea in patients who are not hypoxic, and in some cases provides no additional benefit over room air (American Academy of Hospice and Palliative Medicine, 2023).

In hospice, oxygen is continued when it provides relief and discontinued when it does not improve comfort or becomes burdensome. As the body naturally declines, decreasing oxygen levels are expected and part of the dying process, not something that must always be corrected (Hospice and Palliative Nurses Association, 2021).

Research supports low-dose opioids, such as morphine, as first-line therapy for dyspnea because they reduce the sensation of air hunger. Simple measures such as elevating the head of the bed and using a fan to create airflow across the face can also significantly improve comfort by decreasing the perception of breathlessness (American Academy of Hospice and Palliative Medicine, 2023).

In hospice care, every intervention is guided by one question: does this improve comfort? If the answer is yes, it is continued. If not, care is adjusted to better support the patient’s experience. This is the foundation of hospice, comfort, dignity, and compassionate care at the end of life.

For educational purposes only. Please consult your hospice or medical team for patient-specific guidance.

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What to Say (and NOT Say) to Someone Who Is Dying

End-of-life conversations are often the hardest and the most important. Many people struggle with what to say, and in that discomfort, default to phrases meant to comfort but that may unintentionally create distance.

In hospice and palliative care, communication is guided by one principle: meet the patient where they are, not where we wish they were.

What to say:

Use clear, compassionate, and supportive language:
“I’m here with you.”
“You matter to me.”
“I love you.”
“Thank you for your life and what you’ve given.”

Acknowledge reality without taking away hope
Hope at the end of life may shift, from cure to comfort, peace, or meaningful connection

Offer reassurance of presence
“You are not alone.”
“We’re going to walk through this together.”

Allow space for emotion.Silence, listening, and gentle presence are therapeutic interventions, not absences of care

What to avoid:

Avoid false reassurance that may invalidate the patient’s awareness. Phrases like “You’ll be fine” can create emotional isolation. Avoid minimizing or redirecting difficult emotions. Fear, sadness, and even silence are normal and should be supported, not avoided. Avoid making the moment about your own discomfort. The focus should remain on the patient’s experience.

Evidence-based guidance emphasizes that honest, empathetic communication improves quality of life, reduces distress, and supports dignity at the end of life (National Institute on Aging, 2023; World Health Organization, 2020; Hospice and Palliative Nurses Association, 2021).

At the bedside, there is no script. But there is a standard of care. Be present. Be honest. Be compassionate. That is what patients remember.

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Understanding Why We Avoid Deep Suctioning in Hospice Care

In hospice care, every intervention is guided by one central question: does this improve comfort? Deep suctioning is often avoided because it does not align with this goal and can cause more harm than benefit.

As patients approach the end of life, natural changes occur. Swallowing and coughing reflexes weaken, and secretions may build up in the airway. While this can create sounds such as the “death rattle,” it is typically not uncomfortable for the patient. However, deep suctioning can be physically distressing, triggering gagging, coughing, and agitation, especially in patients who are still somewhat responsive (Hospice and Palliative Nurses Association [HPNA], 2021).

Even in less responsive patients, deep suctioning can cause unnecessary stimulation and physiological stress without improving overall comfort. It also does not address the underlying cause of secretions, meaning any temporary relief is short-lived and the secretions will continue to return (HPNA, 2021).

There are additional risks to consider. Deep suctioning can irritate the airway, increase secretion production, and potentially cause trauma or bleeding. Rather than easing symptoms, it may actually worsen discomfort and increase the burden of care.

In hospice, the focus is on gentle, comfort-based interventions. Repositioning the patient can help secretions drain naturally, and medications such as anticholinergics may be used to reduce secretion production. These approaches are less invasive and better aligned with maintaining dignity and peace.

Understanding why deep suctioning is avoided helps families feel more confident in the care being provided. Choosing not to perform invasive interventions is not withholding care, it is providing the right care.

At the end of life, comfort, dignity, and presence matter most.

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Great tool if you or a loved one needs it!

Need a tool to help when you're out and about? Check out our pocket cards that you can download, print off, and take with you.

They can help people like front desk workers, restaurant servers, and store associates to know that you may need more support and patience from them during your interactions.

Find them here: https://bit.ly/PleaseBePatientCards

Great idea!

Dear Barbara, Will you talk about sedation at the end of life?

There is a misconception that dying is painful and therefore pain medicine or narcotics should be used routinely in the last days to weeks of life. We also need to add to that discussion tranquilizers (to calm) and sedatives (to induce sleep).

Let’s begin with pain when dying. Dying does not cause pain; disease causes pain. Not all diseases create pain, so we need to look at a person’s disease history to determine if we are witnessing actual physical pain, mild flu-like discomfort, or our own fears as we watch the labor of dying.

If physical pain has been a part of the disease process, then pain medicine in quantities that create comfort needs to be administered around the clock, 24/7, until death has occurred. Pharmacologically speaking, there is no reason for anyone to die in physical pain today. People die in pain because of... (more in comments below)

In recognition of National Social Workers Month, we extend our heartfelt gratitude to the dedicated professionals who serve individuals and families with compassion, advocacy, and unwavering support.

Social workers walk alongside people during some of life’s most challenging moments, offering guidance, resources, and hope when it’s needed most. Their commitment to dignity, care, and community makes a lasting difference every single day.

We are thankful for the social workers in our community who help families navigate grief, crisis, and transition with strength and understanding.

Someone has to have the courage to say “We’ve done the best we can. We can’t fix you. Let us help you have some quality time”.

We really aren’t doing people any favors by not being honest with them. We aren’t giving their families the opportunity to do and say what needs to be said and done. We are depriving people the opportunity to put their life in order, to say “goodbye and I love you”. We are not only taking their money but their time. So often the last year of a person’s life is spent in hospitals, at doctor’s appointments, in labs getting blood work, in radiology getting treatments, and at home in bed too sick to enjoy the time they have.

I know, I work on the down side of the medical establishment. You say I only see the situations where medicine doesn’t work but I say I see the real side of living.

When we, hospice workers, explain the dying process before death approaches and, if you can be present, even as death is occurring, then lack of understanding will not turn into fear and anger because death occurred. Education is 90% of what we do when working with end of life situations.

When I get a letter from an upset family about their hospice experience, my first thought is, did hospice not educate enough, interact with caregivers enough, teach enough? Time spent with families talking and teaching brings a better understanding of what is happening and what will happen.

I often remind the family that mom was on hospice service because she was dying. Hospice takes care of people who are dying. If it is an appropriate referral, mom will die while on service.

That is what hospice does — takes care of the dying until death comes. Mom will die while getting hospice care. Hospice will also support, guide and hold the family before, during and after mom’s death.