Death comes for us all
What does end-of-life care look like, really?
The sign for Whatcom Hospice House in Bellingham, Wash. on Friday, Aug. 5th, 2022. Their website includes a detailed hospice house photo tour of available rooms and amenities // Photo by Kate Yeoman
As I walk up Douglas Avenue, the midafternoon sunlight hits the tall, golden waves of grass lulled by the wind. It looks peaceful. A path on the grass leads to a white folding chair, and past the field sits a dark, angular building. The sign reads, “Whatcom Hospice Foundation.”
There are misconceptions about what hospice care is. Although some may have experienced the hardship of a family member going into hospice, they may still associate this form of care with elderly people on the brink of death.
Hospice care falls under the palliative care umbrella. According to Mayo Clinic, palliative care, sometimes used synonymously with hospice, strives to alleviate pain, and increase quality of life, while also supporting the families of the patients.
According to the Journal of Death and Dying, hospices were brought to the U.S. in the early 1960s, when Cicely Saunders, a physician from London, gave a series of lectures on hospice care at Yale. Saunders advocated for an approach to patients reaching the end of their life consisting of providing them with relief and compassion.
Caregivers, such as family and friends of patients, are educated by the hospice nurses to help someone who is usually at home. The average stay in hospice is 20 days, according to the Worldwide Hospice Palliative Care Alliance.
“If you see your person dying, and they’re doing things that you’ve never seen anybody do before, and you don’t know that’s normal, that can be really scary,” said Penny Smith, former hospice nurse, current hospice quality manager, and TikToker from Washington who seeks to “#NormalizeDeath.”
Since its creation, the hospice system has seen some important improvements.
“In the 70s, we used to not tell the patients their diagnosis and prognosis,” said Dr. Stephen Connor, executive director of Worldwide Hospice Palliative Care Alliance. “And we gradually, partly because of hospice, came to realize that we’re probably doing more harm than good by not telling patients.”
However, some issues remain.
“The big problem with hospice care in the US is late referral,” said Connor. “The reason why [patients] are getting there so late is because [of the physicians’] unwillingness to have difficult conversations with the patient. And the other is death anxiety. The patients themselves just don’t want to talk about it. They are afraid that they are going to die … They think there will be some magical treatment to [save them].”
Unfortunately, the requirement to qualify for insurance coverage through Medicare Hospice Benefits (MHB) program is to receive a diagnosis with six months or less left to live. However, physicians tend to overestimate how long their patient will live, said Connor.
Additionally, the MHB requires patients to stop receiving curative treatment.
Families may believe they’re helping the patient by not telling them about their condition — a behavior known as the “conspiracy of silence.” However, in Connor’s experience, the patient often knows that something is wrong with them.
If a patient — or their family — is in denial, stopping curative treatment may not be an option and can lead to a more painful death.
Accepting hospice care can be freeing for the patient and their family. Time spent together would no longer include long waits at the doctor’s office, or physically taxing treatments like chemotherapy. After all, these patients are dying, so why would they want to spend their final days bedridden in a hospital?
“People have the right to die in comfort with dignity, in their home, with people around them who they love,” Smith said. “[And they have the right] to be able to fulfill their last wishes — their bucket list.”
The way many physicians talk about death is changing, too. They no longer use the term “terminal illness;” instead they use “serious illness.”
“The vast majority of people who appear to be in denial are not fully aware of their sickness,” Connor said. “They don’t want to talk about it because they’re afraid that people around them will run away, or that they’ll harm them in a relationship, or [that they will abandon them].”
Talking openly about death helps relieve death anxiety. That is the mission of Smith’s TikTok.
“I had a lot of people who were telling me that they had death anxiety, until they started watching my videos,” Smith said.
Accepting death on hospice care leads to a more peaceful passing, according to a British study conducted on the relatives of terminally ill patients.
Two hands hold each other in comfort. Accepting death on hospice care can lead to a more peaceful, comfortable passing for the dying and less grief for their family // Photo by Sharon McCutcheon on Unsplash
Smith said she once had a patient in his early 40s who was dying of lung cancer. He had no family around him. Working at a care center with another hospice aid, Smith had seen this patient experience “terminal agitation.” Sometimes, the existential suffering leads patients to feeling agitated and restless, especially if they have not accepted their imminent death. It happens in the last stages of life, and it can also affect patients who are younger when they receive their terminal diagnosis.
To comfort the patient, Smith and the hospice aide sat across from each other on the sides of his bed, both holding his hands. Suddenly, the man looked up to the ceiling, and a wave of peace washed over his face. He passed away, accepting his death.