美国国家公共电台 NPR Family Caregivers Bear Much Of The Burden Of Home Hospice Car

 

RACHEL MARTIN, HOST:

People in this country are thinking differently about death. Fewer Americans are dying in a hospital with the support and care of doctors and nurses. More now choose to spend their final days at home, often getting hospice care. One big reason is because Medicare has allowed more patients to qualify for this benefit. But hospice only goes so far, and the actual burden of 24-hour care falls to the families. Blake Farmer of member station WPLN in Nashville reports.

BLAKE FARMER, BYLINE¹: Hospice usually means dying at home. And even though surveys show it's what most of us want, it's not all it's cracked up to be, says Joy Johnston.

JOY JOHNSTON: I'm not anti-hospice at all, but I think people aren't prepared for all the effort that it takes to give someone a good death at home.

FARMER: At age 40, Johnston relocated from Atlanta to New Mexico to care for her dying mother. And one intimate task tipped the scales - trying to get her mom's bowels² moving. Constipation plagues many dying patients.

JOHNSTON: And it's ironically called the comfort kit³ that you get with home hospice. They include suppositories. And so I had to do that, and that was the lowest point. And I'm sure it was the lowest point for my mother, as well. And it didn't work.

FARMER: Johnston, like many family caregivers, was surprised that hospice still left most of the work to her. She says the final weeks of her mother's life, she felt more like a nurse than a daughter. Hospice primarily supports from afar, even in the intense final days, when adjusting morphine doses or handling typical symptoms like bleeding and breathing trouble. And that can be scary, says Dr. Joan Teno. She's a leading hospice researcher at Oregon Health and Science University.

JOAN TENO: Imagine if you're the caregiver and that you're in the house, and it's the middle of the night - 2 o'clock in the morning - and all of a sudden, your family member has a grand mal seizure⁴.

FARMER: Teno says that's exactly what happened with her own mother. While it was difficult for me to witness, I knew what to do.

FARMER: Teno's father, who died in the last year, went to a hospice residence with round-the-clock medical attention. Teno called it a godsend. But an inpatient facility is rarely an option. With more people spending more time on hospice, hospice has become the most profitable service sector⁵ in health care. For-profit agencies now outnumber the nonprofits. But they aren't building hospice units, mostly because they're not profitable. So it's on families to make do at home, and often that means hiring extra help.

KARRIE VELEZ: You want some yogurt?

JEAN MCCASLAND: (Vocalizing).

VELEZ: Some peach - peach yogurt?

JEAN MCCASLAND: What's that?

FARMER: Hospice patient Jean McCasland is sitting at the kitchen table of her home outside Nashville. Nurse aide Karrie Velez is spooning out yogurt laced with that morning's medication, ground up in a pill crusher.

VELEZ: Because if you don't, she will just spit them out.

FARMER: Like a growing share of hospice patients, McCasland has Alzheimer's. And dementia patients need a service hospice rarely provides - a one-on-one sitter so the family caregiver can get some kind of break each day. John McCasland is Jean's husband of nearly 50 years.

JOHN MCCASLAND: I have said from the beginning that that was my intention - that she would be at home through the duration, as long as I was able.

FARMER: But what hospice provided wasn't enough. He had to drain their retirement⁶ accounts to hire a private caregiver out of pocket.

JOHN MCCASLAND: We were told that we would have a nurse visit once a week and more often if we wanted that.

FARMER: Hospice agencies usually bring in a hospital bed, an oxygen machine, a wheelchair - whatever equipment's needed. Prescriptions⁷ show up at the house for pain and anxiety. But hands-on help is scarce. Medicare says hospice can include home health aides and homemaker services. But in practice, it's often limited to a couple of baths a week.

JOHN MCCASLAND: I don't know. I guess I've just accepted what's available and not really thought beyond what could be because this is what they say they do.

FARMER: Families rarely consider whether they're getting their money's worth because they're not paying. It's all Medicare. John even keeps his monthly statements in a three-ring binder⁸, but he'd never taken a closer look at what's charged to the government.

JOHN MCCASLAND: That's $200 a day.

FARMER: Nearly $200 every day, whether the hospice agency showed up or not. The daily rate drops a bit after the first two months, but John does the quick math. At that point, after Jean had been on hospice a year, Medicare had paid the agency $60,000.

JOHN MCCASLAND: When you consider the amount of money that's involved, perhaps they would provide somebody round the clock.

FARMER: Far from it. Medicare data reveals that on average, a nurse or aide is only there at the house about half an hour a day. When Jean died in October, the hospice nurse showed up afterward⁹ to officially document the death. It was just John and Karrie Velez, the longtime private caregiver, who'd been by her side for several days straight. And that's pretty typical, according to professor Katherine Ornstein.

KATHERINE ORNSTEIN: It does take a toll¹⁰.

FARMER: Ornstein studies the last year of life at Mount Sinai Hospital in New York. And she finds the increasing burden on loved ones is reaching a breaking point.

ORNSTEIN: You know, our long-term care system in this country is really using families - unpaid¹¹ family members. That's our situation.

FARMER: For some who've gone through home hospice with a loved one, the experience has changed their own wishes. Coneigh Sea, a social worker from Murfreesboro, Tenn., holds up a portrait of her husband.

CONEIGH SEA: This is probably five years before he died.

FARMER: He died of prostate cancer in their bedroom. Enough time has passed that the fog of managing his medication and bodily fluids - mostly by herself - is cleared. She says it was a burden.

SEA: And for me to say that, there's that guilt¹². You know? But I know better. It was a burden that I lovingly did.

FARMER: But Sea was scarred. And she recently sat down her grown children to make sure they don't do the same for her.

SEA: I told my family - if there is such a thing, I will come back, and I will haunt you (laughter). Don't you do that.

FARMER: Their options are limited, though. Sidestepping home hospice either means a pricey nursing home or passing away with the often unnecessary chaos¹³ and cost of a hospital, which is precisely¹⁴ what hospice was trying to avoid.

For NPR News, I'm Blake Farmer in Nashville.

(SOUNDBITE OF CHRISTIAN SCOTT'S "VIDEOTAPE")

1 byline   

n.署名；v.署名

参考例句：

• His byline was absent as well.他的署名也不见了。
• We wish to thank the author of this article which carries no byline.我们要感谢这篇文章的那位没有署名的作者。

2 bowels   

n.肠，内脏，内部；肠( bowel的名词复数 )；内部，最深处

参考例句：

• Salts is a medicine that causes movements of the bowels. 泻盐是一种促使肠子运动的药物。 来自《简明英汉词典》
• The cabins are in the bowels of the ship. 舱房设在船腹内。 来自《简明英汉词典》

3 kit   

n.用具包，成套工具；随身携带物

参考例句：

• The kit consisted of about twenty cosmetic items.整套工具包括大约20种化妆用品。
• The captain wants to inspect your kit.船长想检查你的行装。

4 seizure   

n.没收；占有；抵押

参考例句：

• The seizure of contraband is made by customs.那些走私品是被海关没收的。
• The courts ordered the seizure of all her property.法院下令查封她所有的财产。

5 sector   

n.部门，部分；防御地段，防区；扇形

参考例句：

• The export sector will aid the economic recovery. 出口产业将促进经济复苏。
• The enemy have attacked the British sector.敌人已进攻英国防区。

6 retirement   

n.退休，退职

参考例句：

• She wanted to enjoy her retirement without being beset by financial worries.她想享受退休生活而不必为金钱担忧。
• I have to put everything away for my retirement.我必须把一切都积蓄起来以便退休后用。

7 prescriptions   

药( prescription的名词复数 )； 处方； 开处方； 计划

参考例句：

• The hospital of traditional Chinese medicine installed a computer to fill prescriptions. 中医医院装上了电子计算机来抓药。
• Her main job was filling the doctor's prescriptions. 她的主要工作就是给大夫开的药方配药。

8 binder   

n.包扎物，包扎工具；[法]临时契约；粘合剂；装订工

参考例句：

• The cloth flower snaps on with a special binder.这布花是用一种特殊的粘合剂固定住的。
• Purified water was used as liquid binder.纯净水作为液体粘合剂。

9 afterward   

adv.后来；以后

参考例句：

• Let's go to the theatre first and eat afterward. 让我们先去看戏，然后吃饭。
• Afterward,the boy became a very famous artist.后来，这男孩成为一个很有名的艺术家。

10 toll   

n.过路(桥)费；损失，伤亡人数；v.敲(钟)

参考例句：

• The hailstone took a heavy toll of the crops in our village last night.昨晚那场冰雹损坏了我们村的庄稼。
• The war took a heavy toll of human life.这次战争夺去了许多人的生命。

11 unpaid   

adj.未付款的，无报酬的

参考例句：

• Doctors work excessive unpaid overtime.医生过度加班却无报酬。
• He's doing a month's unpaid work experience with an engineering firm.他正在一家工程公司无偿工作一个月以获得工作经验。

12 guilt   

n.犯罪；内疚；过失，罪责

参考例句：

• She tried to cover up her guilt by lying.她企图用谎言掩饰自己的罪行。
• Don't lay a guilt trip on your child about schoolwork.别因为功课责备孩子而使他觉得很内疚。

13 chaos   

n.混乱，无秩序

参考例句：

• After the failure of electricity supply the city was in chaos.停电后，城市一片混乱。
• The typhoon left chaos behind it.台风后一片混乱。

14 precisely   

adv.恰好，正好，精确地，细致地

参考例句：

• It's precisely that sort of slick sales-talk that I mistrust.我不相信的正是那种油腔滑调的推销宣传。
• The man adjusted very precisely.那个人调得很准。