How to Help Your Loved One Navigate the End of Life

Focus on dignity and comfort to ease the transition. 

Sitting at the bedside of a dying friend or family member can feel like you’re navigating uncharted territory. Not only are you grieving, you might be confused or concerned about the physical and emotional changes your loved one is experiencing. Understanding the stages of dying doesn’t diminish your loss, but it can help you help your loved one maintain as much dignity and comfort as possible.

As a palliative care physician with the University of Miami Health System, Mariana Khawand-Azoulai, M.D., knows this process intimately. “Hospice and palliative care use an interdisciplinary team to help patients and caregivers and guide them through decisions.”  

What is the difference between hospice and palliative care?

Hospice and palliative care are one specialty, with an important distinction. Both provide comfort, but palliative care may begin when a person is diagnosed and can continue throughout their treatment, even if that treatment is aggressive or curative.

Hospice care begins when a physician determines that the patient has six months or less to live and the decision has been made to stop treating their disease. Both types of care allow seriously ill individuals to maintain as much quality of life as possible for as long as possible.

Palliative care, Dr. Khawand-Azoulai says, “focuses on anticipating and alleviating suffering” for people living with a serious illness. “Palliative and hospice care take a whole-patient, whole-person approach; we look at their home life, function, spirituality, and other aspects – and align our treatment plan with their goals and values.”

“It’s not about dying; it’s about living your best life.”

Coming to grips with the end of life starts by dispelling some common myths. “Hospice is not physician-assisted suicide. We have no control over the timing of a patient’s death,” Dr. Khawand-Azoulai says.

Palliative medicine physicians use opioids and morphine to alleviate pain and breathing problems. (Patients approaching death may experience what Dr. Khawand-Azoulai calls “air hunger” – a drowning sensation where they gasp for air.)

“We use the lowest effective dose of medication. We do not use opioids or morphine to hasten death.”

The stages of dying

Except for sudden or traumatic death, most people go through several changes as they approach the end of life. The stages aren’t necessarily linear and may overlap. A dying person may appear to improve, then take a sudden turn for the worse.

It’s important to note, Dr. Khawand-Azoulai says, that people with Alzheimer’s or dementia may experience these symptoms and continue to live for many years.

If someone knows they’re very sick, it’s important to honor their wishes. Hopefully, they have made their wishes known through an advance directive. If you don’t know, ask or discuss the issue with them. Hospitals and hospice organizations can provide advance directive forms.

Detachment, decreased activity, little interest in daily life and self-care, increased drowsiness or sleeping.

How to help: These signs appear earlier, in the weeks or months leading up to death. Even if someone seems detached or disinterested, they need your companionship and comfort. Dr. Khawand-Azoulai also recommends mentioning the behavior to the patient’s physician, so they have a better idea of the patient’s physical and mental state.

Appetite loss.

How to help: “When the body shuts down, we no longer eat or drink. Patients are not dying because they are not eating; they are not eating because they are dying. It’s hard for some individuals to understand and accept this. However, any medical intervention such as forced feeding has limits and can cause more harm than good,” Dr. Khawand-Azoulai says. If your loved one is conscious and able to eat, offer small amounts of food, ice chips, or sips of water.

Dry or irritated skin.

How to help: 

• Gently massage lotion into the skin and apply lip balm to lips.
• Be especially gentle with the elderly; their skin can be delicate.
• Learn how to properly change the person’s position to avoid bed sores.

Temperature sensitivity.

How to help: Ask if the person is comfortable; add or remove blankets or coverings as needed. If unconscious, check the coloring and temperature of the hands and feet.

Loss of bladder or bowel control (incontinence).

How to help: Provide incontinence underwear and bed pads. If necessary, ask a health care provider about catheters.

Pain.

How to help: A palliative medicine specialist can help monitor and manage pain.  

Swelling, coldness, or blue coloring in the hands or feet.

How to help: Skin changes typically occur in the final hours of life. Partner with a medical professional to keep the dying person comfortable. You may also try gently massaging the person’s hands and feet.

Restlessness, confusion, or agitation.

How to help: Simply being at the bedside, talking to and comforting the person may help. Many patients also benefit from medication to ease anxiety and confusion. Though it can be unsettling for caregivers, it is not uncommon for the dying to say they are talking to or seeing someone who has already died.

Irregular or labored breathing.

How to help: “Breathing changes happen in the last days and hours of life,” Dr. Khawand-Azoulai says. Elevating the person’s upper torso with pillows may help, or they may require supplemental oxygen or medication. A hospice and palliative care physician can recommend the right treatment.

Minimally responsive.

Closer to the very end, patients may slip into a “coma-like” state, where they are minimally responsive, increasingly asleep, or unconscious.

“Offer comfort by being at the bedside. Don’t speak about distressing things. Retell old stories and memories, play music, place pictures of loved ones and pets in the room, and touch the person,” says Dr. Khawand-Azoulai.

Changes in vital signs.

How to help: This is a natural process as the body begins to shut down. “My advice is to check vitals less frequently and to use them as a sign of where the patient is at, rather than something we need to treat or fix.”

Support yourself through the process.

Childbirth is called the miracle of life. Death deserves just as much respect. Supporting someone through the dying process may be the most significant challenge you ever face, but it is also a great honor.

Seeking the wisdom of trained professionals like Dr. Khawand-Azoulai allows the dying and the living to maintain dignity and comfort. Hospice and palliative care professionals can provide the roadmap you need to navigate the journey.

Helpful resources:

A Beginner’s Guide to the End: A Practical Guide for Living Life and Facing Death, by BJ Miller, M.D., and Shoshana Berger.

How We Die, by Sherwin Nuland, M.D.

Hospice Foundation Of America – Caregiver’s Guide to the Dying Process

Nancy Moreland is a regular contributor to UMiami Health News. She has written for several major health care systems and the CDC. Her writing also appears in the Chicago Tribune and U.S. News & World Report.

Tags: death, Dr. Mariana Khawand-Azoulai, end of life, hospice, palliative care