Many years ago, it was common for most people who were dying, to die at home, surrounded by their family and loved ones. As the medical field grew, along with hospitals and places such as nursing homes and assisted senior living centers, a larger percentage of people no longer died at home. A number of years ago, my wife worked on the geriatric ward at the local hospital and I worked on the intensive ward of a nursing home. We both witnessed our share of death, some with and some without dignity.

I recall talking with one older woman about why she was in the nursing home and she told me that her family didn’t want her dying at home, so they convinced her to go into the nursing home. A week later, I was helping care for her, when she told me that this was the end. She took my hand, looked up at me, closed her eyes and breathed her last. In her mind, she died peacefully but without the dignity she wanted, something she told me her family was robbing her of.

Today, more people are choosing to die at home. They want to leave this world from where they are the most comfortable and with those who are dear to them. To many, this is a more dignified way to die. This trend has led to the rise of different forms of care known as hospice care.

According to the Hospice Foundation of America:

Hospice is: 

• Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life.

• An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family.

• Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life.

For most of us, hospice means having a team of professionals who come into the home to both the patient and the family in the last days of someone’s life. Many of you probably know of someone that had hospice come into the home of someone dying.

While hospice generally helps someone with their last days on earth, it isn’t as helpful or good for those left behind, as reported:

“I’m not anti-hospice at all,” said Joy Johnston, who relocated to New Mexico years ago at age 40 to care for her dying mother.

“But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Surveys show dying at home is what most Americans say they want. But it’s “not all it’s cracked up to be,” said Johnston, a caregiver advocate and writer from Atlanta.

She wrote an essay about her frustrations with the way hospice care often works in the United States. Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She said that during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter…

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care. For example, one intimate task in particular — trying to get her mom’s bowels moving — changed Joy Johnston’s view of what hospice really means. Constipation plagues many dying patients.

“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she said. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”

The article went on discuss he fact that in many cases, hospice does not provide all of the services a patient or family expects or needs, resulting in additional undue burdens on the loved ones at home providing the rest of the care.

Additionally, it discusses the high cost of hospice care. Depending on the type of care required and the insurance plan of the patient, the cost of hospice can be extremely high. What the insurance company doesn’t cover, along with what Medicare doesn’t cover, can be financially draining on the family. More than one family has had to drain all of their savings and even their retirement accounts to pay for the hospice care their loved one required.

But here is the problem families face – hospital care is extremely expensive and so is nursing home care. This is one of the driving forces behind the growing legislative efforts to legalize doctor assisted suicide, something I do not endorse.

So, what other solution is there?