Transitioning: What Does it Mean in Hospice Care?

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The last stages of life are the most challenging for a loved one, their families, and caregivers, requiring the need for hospice care. When the health care provider recommends it, what remains is the waiting moments until the person makes that end-of-life transition.

What does transitioning mean in hospice? Hospice marks the shift from curative treatments to end-of-life care. The disease is past the stage where it can be cured or treated, so families make the hard decision to go through the natural process of death. Learn more about this change for the hospice patient, family and care partners.

Understanding the Transition to Hospice Care

The goal of end-of-life care and support is to promote optimum comfort during patients’ final days. People requiring this type of support are at the late stage of their disease and there are no more treatment options. For example, late Alzheimer’s or other dementias don’t have cures yet, so moving to hospice allows an ill family member to prepare their body, mind and spirit as their death approaches.

Why It’s Important

Although one of life’s most difficult decisions, hospice care is essential to sustain the person’s quality of life and comfort as their time of death approaches. Pain symptoms are severe when dementia or other life threatening disease reaches the final stage.

You may see your senior mom or dad in great discomfort and writhing in agony. In this case, the focus of care is no longer treating the disease. Instead, it’s alleviating the patient’s pain caused by their symptoms, ensuring they can have a high quality of life and experience less pain and distress as they leave their loved one’s side with dignity.

Part of hospice is spiritual care. A chaplain takes on the role of providing for spiritual needs. They can help reconnect a person with a terminal illness to their faith and religion, perform sacraments and spiritual practices, and encourage forgiveness among family members. This empowers the hospice patient to achieve peace before their final days.

Factors Influencing the Need for Hospice

The one thing that triggers hospice care is when dementia — or any late-stage disease — no longer responds to treatment. Before it hits this point, substantial factors are prompting the need for end-of-life care.

1. Disease Progression

Dementia follows a disease trajectory from the early, middle and late stages, where symptoms worsen. Since there’s no cure for this cognitive impairment yet, there’s only the end of life after dementia enters its late phase. After medical care, or often called “curative care”, it is then palliative care. Hospice kicks in as the last resort to improve the patient’s well-being during their final days of life.

2. Physical Symptoms

As the damage to the brain becomes worse, so do the symptoms. Your loved one becomes entirely dependent on the primary caregiver or hospice nurse for daily personal care. Memory loss is extreme. Since their communication ability has tremendously declined, conversations are often through facial expressions. Besides Alzheimer’s or dementia, they may contract pneumonia and become vulnerable to other infections.

The complexity of their health condition due to severe symptoms and co-existing conditions will activate the need for end-of-life care and support.

3. Emotional and Psychological Changes

Extreme emotional and psychological changes are a hallmark of a late-stage neurological disease. Due to significant memory impairment, your senior parent will no longer remember you, their grandchildren and close relatives, including details about their personal lives.

These changes can feel overwhelming for a single primary caregiver to handle. Therefore, a team of care partners including social workers, spiritual counselors and other care providers is necessary to ensure the patient continues receiving adequate care and attention until their last day.

These factors contribute to transitioning to hospice. Additionally, three people are involved in this health care decision — the patient, the family members and the health care providers.

Signs of Approaching End of Life in Hospice Care

The shift to hospice is in itself a sign your loved one has limited time. While hospice providers often recommend it for those with six months or less to live, patients can receive end-of-life care for as long as possible, depending on how the disease advances.

On average, 50% of patients in hospice pass within three weeks, but a notable 12%-15% have survived for six months or more. While hospice doesn’t treat any illness, the quality care and emotional and mental support can improve the patient’s situation and potentially prolong their life.

Here are other telltale signs of the last days of life:

1. Worsening Symptoms

Dementia symptoms become worse as the disease advances to the late stage. In addition, comorbidities like pneumonia or respiratory infections likely occur, complicating health conditions and worsening symptoms.

Since communication is challenging at this stage, your loved one may express their discomfort through moaning or groaning, facial motions, clenching their teeth and stiffening their body. The hospice team may prescribe a liquid pain medication that can be absorbed inside the cheek or under the tongue to provide instant relief.

2. Significant Decrease in Activity Level

From being able to stand, walk and talk, they slowly become resistant to any movement or form of activity. They’re bedridden and are sleeping most of the time, resulting in muscle stiffness and injury to the skin due to pressure. Repositioning their body from lying on the back to the side may be possible, but this ultimately becomes unnecessary as their final moments come close. Their facial expressions will show if they’re in pain, such as through grimacing. Spending much of their day in bed can signal the end of life.

3. Declining Appetite

A loved one with late-stage dementia may have very little to no appetite, which is normal as the body’s systems shut down one by one. They may refuse food due to swallowing problems and choking whenever they ingest something. Don’t force any food since it may increase the risk of choking and stomach discomfort. However, they may drink water or suck on ice chips now and then to keep their mouth moist.

4. Losing Interest in Their Surroundings

A phenomenon called “detaching” happens to people in their final moments. They begin to let go of life bit by bit by losing interest in activities they used to love, being unresponsive to questions and talking less to others. Despite this, the health care providers, caregivers and family members should still converse as if the patient is paying attention because hearing is the last sense to lapse.

5. Bowel and Bladder Changes

They may also lose control of their bladder and experience frequent constipation and incontinence. Your doctor may recommend various solutions to reduce the discomfort with these changes, such as increasing stool softener and using a Foley catheter.

6. Decreased Body Temperature

Losing body warmth is another sign of the end of life. Your loved one’s hands may feel cold to the touch as their body’s temperature drops. As a result, they may develop a mild fever. Avoid heating pads to warm them up, as these can increase the risk of burns on thin and sensitive skin. Instead, give them an electric blanket or a warm, cottony covering to protect their body from cold.

7. Vital Signs Drop

Fluctuations in blood pressure, heart rate and respiration become apparent during the final hours or days. Although these irregular vital signs are expected, inform your health care provider if you notice these changes.

8. Skin Changes Color or Appearance

The skin on the hands, feet and knees may turn pale, gray or purplish. It may also become mottled or blotchy, which are signs your loved one may pass within days or hours. Like other body parts, the skin deteriorates during the end-of-life stage. If they develop wounds due to this, apply medications to reduce the pain and prevent infection. Don’t attempt treatment using invasive methods, as it may worsen the skin condition.

9. Noisy Breathing

A dying person may also experience alternate periods of no breathing and/or rapid breathing. Family members may find the noisy breathing pattern distressing, but it often does not indicate pain or suffering. Breathing issues happen as the body’s internal organs slowly turn off. Sometimes, elevating their head using an extra pillow or turning them on the side can reduce laborious breathing.

10. Fading Consciousness

They may also experience a coma-like state, particularly hours before their final moments. They lose consciousness as the blood supply to their body further declines. During this time, they become completely unresponsive and unable to communicate or open their eyes. While it may be challenging to stay collected when you witness this, it’s part of the natural process of death before the brain stops functioning.

Courtesy Unsplash

Making the Transitions Comfortable and Meaningful

Making the transition to hospice is the toughest care decision a family makes. While it’s true that such a move means a loved one’s condition will no longer improve, they can maintain a good quality of life and live comfortably with hospice care. Here are some goals of care to make the transition more comfortable:

Help them settle in by creating a familiar environment

Your presence is a significant source of emotional support during the transition.

Offer your support

Letting them know you are there to help can make the move smoother. A gentle touch of reassurance from family caregivers or anyone on the health care team can make a world of difference.

Schedule frequent visits

Whether they’re receiving hospice in their home or a facility, make sure to see them regularly so they don’t feel lonely.

Your Loved One Can Benefit From Hospice Care

Dementia is an overwhelming health condition as it affects the whole family. If a loved one gets diagnosed, involving everyone in the care plan and treatment journey can help delay the disease’s progression for several years until hospice is needed.

End-of-life care is essential for the overall relief of worsening dementia symptoms. By alleviating discomforts, boosting their quality of life and providing spiritual support during their final days, a loved one can pass in peace and dignity.

About the Author

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Beth Rush

Beth Rush

Beth Rush is the Managing Editor and Content Manager at Body+Mind.

Body+Mind features articles about diet, fitness, mental health, parenting and health care.




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