Hospice vs. Palliative Care – What to Expect?

“If palliative care were a pill, every doctor would prescribe it and every seriously ill patient would take it.” - Dr. Steven Pantilat, Life After the Diagnosis

Key takeaways:
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    Palliative care is a medical specialty that increases the quality of life for patients of any age diagnosed with a serious illness.
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    Patients on palliative care can receive disease-curing treatment and palliative treatment at the same time.
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    Hospice care offers palliative treatment for patients facing their last six months of life.
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    Patients on hospice stop curative treatment and receive palliative treatment only.
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    Studies show that patients with serious illnesses who receive palliative and hospice care report better quality of life than patients without it.

Talking about death isn’t easy. Avoiding death is, but doing so creates myths and misunderstandings about hospice and palliative care. This confusion can impact the care you and your loved ones receive when death becomes unavoidable. Studies show that palliative and hospice care improves seriously ill patients' quality of life by reducing their stress, pain, and discomfort.

What’s the difference between palliative care and hospice care?

In his book Life After the Diagnosis, palliative care pioneer Dr. Steven Pantilat writes, “Palliative care is a distinct medical specialty that helps seriously ill people live as well as possible for as long as possible and helps relieve their pain, stress, and other symptoms.”

Palliative care offers treatment for patients who are not yet nearing the end of their life. Patients of any age with serious illnesses can continue their regular disease treatment with their disease specialists while also receiving care from the palliative care team, which includes a doctor, nurse, and other services. The palliative team’s goal is to improve the quality of life for the patient and their loved ones during their treatment.

Hospice is an end-of-life service within the palliative care specialty delivered to a patient’s home or care facility. The goal of hospice is also to improve a patient’s quality of life, but it focuses on their last six months. It differs from palliative care because hospice patients stop curative treatment and opt for comfort measures only.

Studies show both services improve the quality of patients’ lives. Palliative care even lengthens life for those with serious illness by nearly three months, a significant amount of time for patients.

Yet, few patients understand their palliative care options. And most don’t consider hospice until the last few weeks of their lives, leaving them with more discomfort and anxiety than those who enroll in hospice sooner.

Which serious illnesses need palliative care?

According to Dr. Pantilat, patients of any age with these listed illnesses could improve and prolong their lives by consulting with a palliative care physician now:

  • Metastatic cancer.
  • Leukemia, myeloma, or lymphoma.
  • Heart failure requiring more than one hospitalization within a year.
  • Lung disease requiring more than one hospitalization within a year.
  • ALS, also known as Lou Gehrig’s disease.
  • Kidney failure requiring dialysis.
  • Liver cirrhosis.
  • Liver, heart, or lung failure while on a waiting list for a transplant.
  • A stroke that left you impaired or weak.
  • Dementia with a growing difficulty in caring for yourself and/or loved ones.
  • Advanced Parkinson’s or Huntington’s disease.
  • Several chronic illnesses at the same time, making it hard to care for yourself or leave home.

For people with such illnesses, studies suggest it is best to start palliative care early. As the disease progresses, the need for palliative care will likely increase.

Patients receiving palliative care with their disease-focused treatments report improved symptoms, less pain, and less stress. Palliative care specialists are experts in treating such symptoms. Their training also prepares them to talk with patients about their fears and concerns, uncovering what patients want and helping them fulfill their hopes and dreams using various resources.

Patients live better for longer with palliative care

A Harvard Medical School study published in The New England Journal of Medicine shows patients with palliative care live better for longer.

Dr. Pantilat writes in his book, “If palliative care were a pill, every doctor would prescribe it and every seriously ill patient would take it.”

In the Harvard study of 151 patients with incurable lung cancer, the medical team gave half of the patients early palliative treatment along with standard chemotherapy. The patients who received palliative treatment reported reduced symptoms, less pain, less shortness of breath, less nausea, less depression, and fewer trips to the hospital and the intensive care units. They also lived longer by 2.7 months, a valuable gift to end-stage cancer patients.

Palliative care reduces stress for loved ones

A study published in The Journal of the American Medical Association (JAMA) found that palliative care is also good for family members. Loved ones who talked to care providers about the dying patient’s death and treatment reported better health, improved quality of life, and less depression six months after the patient died.

Hospice patients report better quality of life, too

When a patient’s medical team believes treatments can no longer help the patient live longer than six months, it’s time to consider hospice.

Like all palliative care, hospice provides a team of caregivers to relieve discomfort, pain, and stress. Hospice care optimizes patients’ end-of-life journeys by tailoring services uniquely for each patient and their loved ones.

Studies show patients have better outcomes when hospice starts sooner than later. When patients receive hospice care only in the last week of their lives, it does not improve their quality of life more than those who don’t receive it. But those who started hospice two months or more before their death reported a significantly higher quality of life.

Dr. Pantilat, with over 30 years of palliative care experience, believes patients are referred too late. Most hospice patients wish they started comfort care sooner to improve their final days and the impact on their loved ones, he writes in Life After the Diagnosis.

Can a patient get off hospice and back on curative treatments?

Patients don’t have to stay in hospice if they wish to restart disease-focused treatment.

Many patients wait to enroll in hospice to focus on building strength to start the next phase of curative treatment. However, enrolling in hospice might help you get stronger. If so, you can disenroll to restart therapy for your disease.

Since hospice improves patients’ quality of life, there is little reason to wait if one can enroll and disenroll. When a patient stops hospice to restart treatment, it’s wise to follow up with a palliative care physician to maintain their improvements.

Start the conversation now

Sometimes hospice decisions are delayed because talking about the end-of-life is sad and distressing. Family members may believe it’s bad for the patient’s mental health to discuss death.

To reduce death anxiety and end-of-life distress, Dr. Pantilat recommends talking now about what kind of care you want at the end of your life and during a serious illness. What do you envision when you see yourself dying? Where do you want to be? Who do you want there? How do you want to feel?

Early discussion and early palliative care clarify what patients and their loved ones want. This clarity helps people get help when needed, reducing the stress and discomfort of facing serious illness and, eventually, death.

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