I’m not sure I should go back on hospice. What do you think?

Most of my patients who passed away received hospice care at home. Hospice provides the best care possible at end of life. The hospice team focuses on physical, emotional, social, and spiritual wellbeing. Comfort and dignity are provided to both the patient and loved ones.

I am a strong advocate for hospice care. But, for many patients the choice to enroll in hospice is a difficult one. A recent patient told me why she dropped out of hospice:

Ureteral Stent

“Joan” is in her 70’s. Twelve years ago cancer was found in one kidney and the kidney was removed. The cancer came back in her other kidney three years ago. She received many treatments but had complications and was hospitalized several times. A doctor suggested hospice and she agreed.

Joan was appropriate for hospice based on her advanced disease state and prognosis. Yet, Joan did not look as sick as she appeared on paper. Her hospice nurses remarked frequently that she appeared strong. She was able to care for herself at home. In fact, she told me that she had recently been rearranging her furniture at home.

She was doing well until she became very weak with a fever and abdominal pain. She decided to go to the emergency room. She then decided to drop hospice and was hospitalized.

Joan had a known blockage in the ureter that led from her remaining kidney to her bladder. A tube (“ureteral stent”) was used to solve the blockage. The urologist changed the stent every six months. When Joan entered hospice, the stent was no longer replaced. Eight months later Joan became acutely ill. When the urologist removed the old stent, it was full of pus.

I’m frequently surprised when I first see a patient. The medical record describes the diseases but does not describe the person and the person’s life. When I first met Joan, she looked very good. She was still weak from her infection but much improved. She was watching football on TV, and we proceeded to talk about our favorite teams and players. While we talked, she had at least two phone calls from friends. She politely told them that she would call back later. “I’m talking with the Doctor”. She told me about recent events and concluded with the statement: “I’m not sure I should go back on hospice. What do you think?”

Joan has a terminal illness, but she also wanted a treatment that prolonged her life. If Joan goes back on hospice, it is likely her stent will become blocked again. She will again become acutely ill. Joan is a patient who would benefit from Palliative Care.

HOW IS PALLIATIVE CARE DIFFERENT FROM HOSPICE CARE?

Most people, including most doctors, think of palliative care as being the same as hospice. It is not.

  • Palliative care is for patients who have serious medical conditions. For instance, a patient may have cancer, heart, lung, kidney, or neurologic disease. But the patient does not need to be terminally ill. Remaining life expectancy is not used to determine who receives services. In contrast, patients are eligible for hospice only if prognosis is six months or less
  • Palliative care can include medical interventions that are curative or life-prolonging. A palliative care patient can receive chemotherapy, other advanced medical treatments and be hospitalized. Hospice patients typically stop disease therapies and are rarely hospitalized.
  • Palliative care services are provided at home, in the community, in the clinic and in the hospital. Hospice services are provided at home and in hospice facilities.

In palliative care, a person does not have to give up treatment that might cure a serious illness. Palliative care can be provided along with curative treatment and may begin at the time of diagnosis. Over time, if the doctor or the palliative care team believes ongoing treatment is no longer helping, there are two possibilities. Palliative care could transition to hospice care if the doctor believes the person is likely to die within six months. Or, the palliative care team could continue to help with increasing emphasis on comfort care.

NIH - What are Palliative Care and Hospice Care?

HOW IS PALLIATIVE CARE DIFFERENT FROM TYPICAL MEDICAL CARE?

Palliative care places special emphasis on care of seriously ill patients. It provides team based multidimensional care where and when it is needed.

  • Palliative care uses a care plan. Difficulty breathing, weakness, loss of appetite, pain, insomnia, stress, depression are common problems. A team supports the patient and loved ones. Communications, counseling, education, coordination of care and medication management are especially important. Providers interact with PCP’s, specialists, and hospitalists.
  • Palliative services come to the home when needed. A team member who knows the patient is available day or night, weekdays, or weekends. Social workers and counselors are important members of the team.

 

BOTH/AND    not   EITHER/OR

Palliative care provides the best care possible for seriously ill patients. Palliative care combines the benefits of both traditional care and hospice care. Patients do not need to choose one or the other. Patients do not need to decide to forego curative or disease modifying care.

How does a patient find palliative care?

Palliative care is an evolving and growing service. It is not as widely available as hospice care. Insurance coverage is also less consistent. A provider guide is available at GetPalliativeCare.org

 

On a national level, these organizations are advocating to advance palliative care:

Center to Advance Palliative care: https://www.capc.org/

Coalition to Transform Advanced Care: https://www.thectac.org/

I am part of a coalition called Hui Pohala which is working to expand palliative care services in Hawaii. We are supporting the efforts of the Department of Human Services in Hawaii. We want to put in place a palliative care benefit for Medicaid recipients.

For more information, visit https://huipohala.org

I applied to medical school long ago for a reason. Providing excellent care is more than understanding how to diagnose and manage disease. Our hearts must be in taking care of people. I’m excited to continue the battle to change the system.

I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.
Warmest Aloha,
Attached are some files that explain palliative care in more detail.
Posted in Caregiving, Dr. Warren, Geriatrics with Aloha and tagged , .

4 Comments

  1. Thank you, Dr. Warren, for this very valuable information about Hospice and Palliative care. Anyone can offer these distinctive differences but you, as always, bring in patient care, the human aspect of medical care. How I wish you were at the medical school, helping medical students become humanist/physicians. Thank you.

    • Hi Frances,
      Mahalo for your support. I actually am active at the medical school and am faculty at the UH Geriatric Medicine Department. I give yearly talks to medical students and I’m happy to say medical students “get it”. As medical students move forward in careers, we become ingrained in the way things are done. Creating change is a big challenge. I’m looking forward to posting about “changemakers”. Huipohala definitely is an organization that is working towards change. I’m optimistic that change will come. Sometimes it takes a very long time and then one last twist and the jar is open…we move forward.

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