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Thursday, June 14, 2007 | Updated at 9:42 AM EDT

Aileen's good death
She made her own decisions throughout a fiercely independent life. Death would be no different.
Hamilton Spectator Photo

Aileen, independent to the end.

 
Hamilton Spectator Photo
SPECIAL TO THE HAMILTON SPECTATOR

Aileen Petty and daughter Catharine. Aileen was doing well at home until a serious fall. Catharine was glad her mom was able to convey her end-of-life wishes

 
(Jun 14, 2007)

It was time for a meeting, and so the family sat down with a doctor at McMaster hospital. Aileen Petty, two months shy of her 94th birthday, was in rough shape. There were options for her and the family to consider.

Aileen and her three children listened. It had happened so quickly since her fall; she had rapidly grown weaker, could not keep food down, the feeding tube hadn't worked.

"There are four choices," the doctor finally said.

One, you can continue to try to eat conventionally. Two, we can try to reinsert the tube into your nose. Three, we could insert the feeding tube directly into your stomach. Or four, none of the above. No feeding at all.

The implications of option four were obvious.

Aileen did not hesitate.

It's an agonizing time for families when confronted with choices such as this, when a loved one approaches the end.

Complicating matters can be the state of mind of the patient. Are they suffering from dementia or Alzheimer's? If they refuse treatment, or insist upon it, are they making a decision that they would make if of sound mind?

This is why it's important to talk with your elderly loved one to make sure that those wishes are conveyed ahead of time. Write them down. You don't necessarily need a legal document drawn up, just ensure that opinions are made clear, verbally but also on paper, to your doctor, family, ideally to all parties.

Talk early. Time can be deceiving.

Aileen's path to her decision was swift. Not even a month earlier she had been at home, baking cookies, active, healthy, hanging her laundry on the line in the back yard, living independently in a house she and her late husband had built in Ancaster 50 years ago.

She had been a widow for about 30 years, was accustomed to looking after herself. She lived with her oldest son, Ross, although Aileen never failed to point out that it was he who lived with her. Fiercely independent, she could look after herself just fine. Still drove. Some days one of the kids would call, and she'd be slow getting to the phone.

Sleeping?

"No, just resting my eyes."

One day she was out shopping with her daughter Catharine. They returned to mom's house, and Aileen slipped on a piece of ice. She seemed OK. But three hours later she called Catharine. "I can't get up."

She had cracked the ball in her hip joint. The surgery went fine, but she went downhill from there in hospital, the sudden restriction of what had been her routine of regular activity seeming to drag her down. She took to her bed, her body started to shut down, she couldn't eat.

And now the doctor gave her the four choices. She waited all of a few seconds.

"I'll choose number four," she said.

Total independence to end-of-life care in less than three weeks. But that is the daunting nature of the final stages of life. It is not predictable. What can appear to be a terminal situation can extend into months or even years of extended life. What can appear as a small setback can accelerate rapidly toward death.

Depending on the circumstances, the situations can either be blessings or tragedies for the patient and the family.

By choosing option four, Aileen had chosen no feeding. The inevitability that followed from that was, of course, sad for her family, but the best part was that Aileen was still as sharp as a tack mentally, knew exactly what she wanted, and expressed it.

In that sense she was independent to the end. Die at home? No. She did not want that. Home was where she did her own thing. No one was ever going to care for her in that house. She didn't want to go St. Peter's Hospital, which specializes in palliative care. She associated it with a nursing home.

No, she would die in the hospital.

"I've lived a long, independent life," she told her kids. "I'm tired and that's my choice. Just let me go. Just let me go."

Her kids talked it over in private. Were any of them opposed to her decision? No. They all said their piece. It was mom's decision, her choice.

A nurse took out the IV. Gave her daily injections with painkilling medication to make her comfortable. But every day she refused meds that would stabilize her heart rate, even though they would not have prolonged her life. She slept pretty much regular hours, midnight to 7, each day.

She had outlived most of her friends, but there were a few people she wanted to see. They dropped by, she said goodbye.

Her daughter Catharine wondered how they would have coped if mom had not had her faculties. What if she had been unable to convey her wishes? Or if her decision making seemed muddled?

"Mom saved us all from having to make the decision ourselves," she said.

It is never easy to let a loved one die. End-of-life decisions can tear families apart. It underscores the importance of an elderly loved one declaring their wishes in both a living will, and a legal power-of- attorney document. Physicians are ethically bound to honour the wishes of a dying patient who is of sound mind.

One or more of Aileen's kids or grandkids was with her at all times.

On Wednesday, March 28, 2007, three weeks and three days after the fiercely independent Aileen entered hospital, she drifted off.

A good death.

"Yes it was," said Catharine. "As sad as you are, it was her choice until the end."

Full Circle:

A Family Guide to Eldercare

The Spectator presents a week-long series on how to get help for seniors in need of care.

Saturday: The search: One family's journey

Monday: Staying home: How to get help

Tuesday: Long-term care: Finding answers

Yesterday: Know your rights: Legal and personal issues

Today: End-of-life care: Compassion and planning

Tomorrow: The Sandwich Generation: Feeling the squeeze

* Log on to thespec.com/fullcircle for the full series, more links, videos and slide shows.

* Give your views on today's issues on the Full Circle forum at ideas.typepad.com/circle/.

* Send us tips on how to navigate eldercare. E-mail fullcircle@thespec.com

* "I watch a lot of game shows. It keeps my mind occupied," says senior Carmen Weeresinghe. Check out her story on video at thespec.com/fullcircle.

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