Palliative Care, Incurable Illness and Quality of Life

Palliative care helps anyone suffering from symptoms of a severe illness.

If you’re reading a post about palliative care, you probably know you’re going to read about death. Let’s take it a step further: Everyone reading this post is going to die, and your death probably won’t be as quick and as painless as you want. The downside of living in a society with modern medicine is that you will probably die from an illness that’s treatable but not curable. However, over time, and as you age, the treatments will become less and less effective.

If you’re not prepared for death and would rather not think about it, you’re in good company. Most people don’t want to think about death, even if they or their loved ones are in the last stages of a long-term illness.

When Leslie Blackhall, MD, came to UVA in 2001, palliative care wasn’t a recognized medical specialty. With her clinical experience and background in biomedical ethics, Blackhall has made palliative care a key component of managing incurable illnesses.

And this includes talking about death.

Palliative Care and Hospice Care

Palliative care serves anyone at any age suffering from pain and other extreme symptoms caused by severe disease or intense treatments, like chemotherapy. “People think that palliative care and hospice care are the same thing,” Blackhall says. “But one is a subset of the other, and they both address quality of life.”

Both address pain management and quality of life in patients who are dealing with incurable, often long-term, illnesses and their treatments. These often cause complications and pain.

Additionally, hospice care:

  • Addresses the issues during the last stages of an illness
  • Usually happens during the last weeks of someone’s life, although some move out of hospice back to palliative care
  • Covers both hospital care and in-home care, like 24/7 nursing care to cover a pain crisis in the middle of the night.

Palliative Care Helps You Cope With Long-Term Illness

“Palliative care has only been a recognized medical specialty since 2006,” says Blackhall. Before that, there was no specialty dedicated solely to how the patient lives with their illness.

“Other doctors concentrate on treating the illness, whether that’s medically or surgically,” she says. The doctors treating the illness often didn’t have the time or expertise to think about how the illness or treatment affected the patient and his or her caregivers.

“The doctor treating the illness should be focused on the illness,” she says. “But treatments cause other issues.” Palliative care was designed to help with the logistics of long-term illness, including:

  • Who’s looking after this person?
  • Can the person physically get to appointments and treatments?
  • Who cares for the caregiver?
  • How do we manage the finances?

Blackhall is part of a team composed of patient care coordinators, mental health professionals, chaplains, pharmacists and social workers that meet weekly to discuss their cases.

“How are you, the patient, mentally, physically, logistically coping? That’s our focus,” she says.

Are You or a Loved One Dealing With an Incurable Illness?

Contact the Palliative Care Clinic

Treatments Have Side Effects

Patients can be preoccupied with fighting an illness, but treatments have complications. Chemotherapy, transplants and experimental treatments can prolong life, but they can diminish the patient’s quality of life. Side effects can be painful and impact appetite, sleep and mobility. Pain and loss of function can be as difficult to deal with as the underlying illness.

“I ask patients what they want to be able to do to have a better quality of life,” says Blackhall. “They are undergoing so much. I ask them what they want to do now — today — that can improve their life.”

For instance, a patient might say that he wants more than anything to play a round of golf with his friends. He might not physically be able to play the game, but Blackhall might ask, “What about the activity do you like the most?” If what he misses most is being with his friends and going outside, but he’s too tired and in too much pain to do that, palliative care can help.

“We help people live the best life they can, despite their illness,” she says.

Everyone Will Need Help

Blackhall’s main message to everyone, whether or not they or their loved ones are currently confronting a long-term illness is this: Enjoy the life you have while you still can. “Live the life you want to live now. Don’t wait,” she says.

But when the time comes that you or a loved one has to undergo treatment for an illness, ask for help. “Everyone will need help eventually, but it’s always a shock,” says Blackhall. People feel alone and in the dark, but they don’t have to.

“You and your loved ones are not alone. There are resources at UVA that can help you. Reach out to us and we can help you.”

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