End-of-Life Preparations Brings up Confusion About Hospice

When my 74-year-old neighbor, Marian, announced that she had pancreatic cancer, it was in her typically stoic British manner, “Oh, I’m afraid I have a bit of bad news.” Her cancer had metastasized and her doctors told her she had six months to live. I was stunned—Marian ate organic, hiked and lived a very healthy lifestyle. Her family consisted of a brother, sister-in-law and niece in the UK. An extremely practical person, she began to prepare for the end. She updated her Living Trust, arranged for her cremation and sold her car. She knew she needed to do these things while she could.

I helped her with small things

I picked up her meds, took her to the doctor and went grocery shopping. But it soon became clear that this wasn’t going to be necessary—Marian’s cancer was very progressive. She needed stronger drugs and couldn’t keep food down. Her brother and sister-in-law arrived, and they would stay until the end. Somewhere along the line, they enlisted the support of Hospice—in our case, Sarah, who sat down with us and explained how hospice worked. She put a sticker on Marian’s phone—Call Hospice First, with the number. Marian had signed a Do Not Resuscitate form; if she started to fail, she didn’t want anyone’s calling an ambulance and having a team of well-intentioned EMTs performing a Hail-Mary effort to save her.

Sarah proved to be a saint

She stopped in nearly every day; she’d give Marian her meds and talk softly with her. Marian would drift off to sleep, wake up, and Sarah would still be there. She was an incredible comfort to Marian, and she soon moved in. She cared for Marian in the final weeks of her life and was there when she died. The doctors had given Marian six months to live, but she died within six short weeks of her diagnosis.

Discussions about end-of-life care and hospice

At California Document Preparers, Living Trusts are an important part of our business; they stimulate a lot of discussion about end-of-life preparation, and hospice is a topic that frequently surfaces. There are wonderful stories about caregivers like Sarah and admiration for the organization’s overarching goals of dying with dignity without eleventh-hour heroics. But there is also a lot of confusion about hospice.

Hospice is comfort care; it aggressively treats pain and other symptoms without trying to cure the illness. It is a package of care services that is almost always provided at the patient’s home, which can be a private residence or a care facility. Hospice is covered by Medicare, Medicaid/Medi-Cal and most private insurance.

There are a few things about hospice that may surprise you

• Hospice, which began as a somewhat random grassroots effort in 1990 to improve end-of-life care, has become a business.
• In 1990, only 5% of hospices were for-profit operations; by 2014, that number increased to 63%.
• Once dominated by community and religious organizations, the hospice movement has been transformed into a $17B  industry.
• About half of Americans of retirement age will employ a hospice service before death, but many consumers

With the aging of the large and vocal babyboomer population, it doesn’t take much imagination to foresee the industry’s continuing to grow, but this is an industry that is not well-regulated. One study found that hundreds of hospices were going six or more years without the required inspections that ensure they’re meeting Medicare standards. The biggest controversy is about quality of care between for-profit and nonprofit hospices.

Because hospice is a topic that comes up frequently, we’re going to be addressing hospice in future blogposts. We’re also going to follow up on this post with one that takes a closer look at the differences between for-profit and nonprofit hospices.

If you have questions about preparing your end-of-life documents—A Living Trust, Advance Healthcare Directive and Power of Attorney—contact one of California Document Preparers’ three Bay Area locations. We help you through every step.