Will Hospice Shorten Your Life?

Many of us might believe that when we choose to accept hospice care at the end of our lives, our lives will be shortened as a result. After all, hospice patients often stop painful chemotherapy or other interventions that are expected to prolong their lives.

But a number of studies have proven this not to be true. A landmark study from the Massachusetts General Hospital in 2010 made some startling findings. Researchers randomly assigned 151 patients with Stage IV lung cancer to two possible approaches to treatment. Half received the usual oncological care. The other half received the same oncological care with additional visits from a palliative care specialist. These specialists focus on preventing and relieving the suffering of patients.

Those who saw a palliative care specialist chose to stop chemotherapy sooner, entered hospice far earlier and experienced much less suffering at the end of their lives. And they lived 25% longer that those who did not receive palliative care!

Atul Gawande, M.D. ,in his groundbreaking book, “Being Mortal”, states that “Like many other people, I had believed that hospice care hastens death, because patients forego hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies show otherwise.”

He adds, “For some conditions, hospice care seemed to extend survival. Those with pancreatic cancer gained an average of three weeks, those with lung cancer six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer when you stop trying to live longer.”

Gawande, a practicing physican in Boston, reports that most terminally ill cancer patients have had no discussion with their doctors about their goals for end of life care despite being within months of death. But those patients who enrolled in hospice, suffered less and were better able to interact with others forlonger period of time. “People who had substantive discussions with their doctor about their end of life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”

Thank You, Hospice!

In my last post I mentioned a conversation the medical director of my mom’s assisted living residence had with me. She suggested we enter mom into the hospice program. With some trepidation I agreed and met with the hospice nurse who very gently described to me the program that would follow.

She informed me that a hospice aide would visit with my mom several days a week to help her in any way needed. She, as the assigned hospice nurse, would check in with mom weekly and give me an update. In addition Medicare would provide her with a much more comfortable wheelchair and mattress for her hospital bed.

I stopped in to see my mother one day when the hospice aide was with her. The aide had gently combed her hair, put cream on her dry skin and dressed her in a lovely dress with matching scarf and earrings. She looked beautiful. The aide commented on what a lovely woman she was.

After a number of visits in the following three weeks,I could see that my mother was failing. She had a hard time speaking a full sentence, was asleep most of the day and was becoming increasing unresponsive.

On Sunday morning, November 30th I received a call from the residence that mom was totally unresponsive and was taking rapid short breaths. I called the hospice nurse, picked up my daughter, who was visiting with us, ( my wife was away at a conference) and rushed to the residence.

The hospice nurse on call arrived before we did. He had given mom medication to ease her pain and make her more comfortable. He assured me that he would be available all day to help in any way needed. It was clear to me that the end was near.

My daughter and I spent my mom’s last hours with her. She passed away in comfort, in her own bed, holding my hand. I could not have asked for better circumstances for my mother to leave this life.

A few days later, I though about what would have happened if mom was not in hospice. She would have been transported to the emergency room in an ambulance. A number of nurses and doctors would probably go into action trying to keep her alive. She would die in strange circumstances amidst all the noise and activity of the emergency room, with my daughter and I witnessing her demise from the background.

Thank you, Broad Reach Hospice for making the end of my mother’s life, gentle, loving and peaceful.

Is A Hospice Program Right For Your Mom Or Dad?

When the medical director of my mother’s assisted living residence called me I was curious to know what she wanted to talk to me about. After informing me how much everyone at the facility loved my mom she then made a statement that took me by surprise. “I think you mom would benefit greatly by going into a hospice program.”

My thoughts immediately jumped to “Oh my God, she’s about to die. The end is very near.” The next day a hospice nurse visited me and explained to me what hospice was and whom it could benefit. She did state that in order to qualify for hospice an individual is expected to die in 6 months or less. But she added that some patients have been in hospice for a year or more. And in some cases they have improved so much they are taken off of the program.

I learned that Medicare would pay for an upgrade to her wheelchair that would make her much more comfortable and provide for any other medical equipment she needed. A nurse would be assigned to her who would monitor her condition weekly, review her medications and report back to us if any changes in her condition occurred. In addition a home health aid would visit her three to four times a week to bathe her or provide any other personal care that would benefit her.

She would be assigned a social worker that could assist her and our family with any emotional support that was needed. An experienced physician would participate in the development of her care plan and oversee her medical regimen. And all of these services would be fully covered by Medicare.

Within two days the nurse had visited her, made specific recommendations to changes in her meds and brought in a new mattress and a more comfortable wheelchair for her. I was amazed at how quickly she went into action and how knowledgeable she was about the aging process.

I had noticed for a few months that my mother had deteriorated significantly but I wasn’t sure how to deal with this and who to talk to. The hospice nurse made it clear to me she was available 24 hours a day, seven days a week if I had any questions or concerns. I immediately felt much more comfortable knowing that someone was watching her situation closely and would be available whenever we needed her.

If you have a family member who is beginning to show signs of slipping away I would recommend strongly that you find out more about the hospice program and have a hospice nurse visit you to answer your questions. In most cases she will do an evaluation of your loved one at no cost. The website for the National Hospice and Palliative Care Organization (www.nhpco.org) will help you find a hospice organization in your area.

Namaste, Embracing the Most Vulnerable in Nursing Homes

Namaste Care is a program designed to improve the quality of life for people in nursing homes or assisted living facilities who are agitated, unresponsive or near the end of life. It is often used with people who have advanced dementia. Namaste, is a Hindu term meaning “to honor the spirit within” and was selected to describe a program that brings honor to people who can no longer tell us who they are or cannot care for themselves without assistance.

Joyce Simard, a veteran elder-care social worker, founded the Namaste program. She was concerned that some residents were too frail or disoriented to participate in group activities in nursing homes. She noticed that they would often sleep or slump in their wheelchairs near the nurses station all day. She said, “ That’s not quality of life. What they really need is someone to touch them in a loving way” She has written a book entitled “ The End of Life Namaste Care Program for People With Dementia”

Namaste Care takes place in a designated space that helps to create a safe and comforting environment for all who enter, including residents, their families and staff. Hand and foot massage, carefully brushing or combing a persons hair, and moisturizing the ladies faces with “Ponds” cold cream, are a few ways that bring pleasure when done with a loving touch. Resistance to shaving that many men display because they do not realize that they need to be shaved disappears when shaving is accomplished the “old fashioned” way with shaving cream and “Old Spice” after shave lotion.

Scents of the season are used to provide sensory stimulation.  Flowers that are in bloom, like lilacs in the spring, produce smiles as well as the scent of cinnamon in the fall and winter.  Almost everyone will smile when someone is blowing bubbles or may be wearing an outlandish hat!  Moving arms and legs to music helps keep limbs flexible.  Nourishment and beverages are offered throughout the day so that people with a diminished appetite have more opportunities to eat and drink.

Namaste programs are being incorporated in facilities around the world. On Cape Cod the Epoch Group has made a very big commitment to the concept. It is now used in all Epoch living centers in Massachusetts and Rhode Island. At Epoch Senior Living in Brewster, MA 20 out of 160 residents may be in the program at any one time. A framed statement on the wall of the Namaste room spells out the Namaste Mission: “To embrace our most vulnerable and provide them with a sense of comfort, calmness and serenity because their lives are still relevant.”

Does your Mom need Palliative Care?

A very interesting article appeared on the front page of the New York Times yesterday (April 4, 2010) It was  about Dr. Desiree Pardi,  a leading practitioner of palliative care, one of the fastest growing fields in medicine. Palliative care is the counseling of terminally ill patients regarding their end of life choices. Unfortunately Dr. Pardi contracted terminal cancer and had to choose whether or not to receive palliative care herself. Ironically she chose not to, but rather decided to fight her illness aggressively until the end.

Palliative care has become the standard practice of most hospitals in the country. It’s popularity is a backlash against the harsh, sterile treatment of patients at the end of life that had been practiced in so many hospitals. It stresses the relief of pain, and recognizing that after a certain point, aggressive treatment may prevent patients from enjoying what time they have left.

Dr. Pardi chose to believe that her Doctors underestimated her and that she could fight and win the battle against cancer. But she died a very painful death after extensive chemotherapy and other experimental treatments. She died before many of her colleagues could say goodbye and they grappled with her death. Some said she took the right course fighting her illness to the very end. Others said that she was in a state of denial and refused to accept her impending death.

At what point would you recommend to your own parent that she receive palliative care? It is a very difficult decision and should be discussed prior to the time when a decision has to be made. Have you discussed your parent’s advanced directives with them, their health care proxy, their living will and their power of attorney?

An excellent alternative to the traditional health care proxy and living will is the Five Wishes program. Each individual goes through a form which asks detailed questions regarding how they want the Five Wishes to be carried out. It is available through www.agingwithdignity.org

Wish 1: The person I want to make health care decisions for me when I can’t make them for myself.

Wish 2: My wish for the kind of medical treatment I want or don’t want.

Wish 3: My wish for how comfortable I want to be.

Wish 4: My wish for how I want people to treat me.

Wish 5: My wish for what I want my loved ones to know.

The form guides your parent through the decisions that have to be made in each of these areas. When she is done I suggest that you give her the opportunity to go through the form with you and discuss each area. You will be very glad that you did.