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On Dying Well

AIR DATE: Wednesday, March 5th 2008
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How do you want to spend your dying days?

June Callwood's Twelve Weeks In Spring: The Inspiring Story of Margaret and her Team is the story of a single 68 year old woman with terminal pancreatic cancer. After a lifetime of helping people she suddenly feels very alone and scared as her disease takes over. Her friends, acquaintances, colleagues, and even some virtual strangers change that for her by forming the "Friends of Margaret." They gather around her to provide the care she needs in her home so she can watch spring arrive in her garden. It is a vivid, touching story of community, friendship, and death.

I recently watched as a colleague suffered a similar terminal disease. Unwilling to have her friends physically around her at home, she had us join her virtually instead. During her last days we comforted, humored, and strengthened her with stories, jokes and news shared on a blog created, and managed, for her by her son. Of course, in the end, we were the ones who were truly strengthened.

In this show we're going to talk about how people choose to die ? at home, in a hospice, in the hospital; and the decisions that they make, or should make, to help them through their last days.

Our guest for the hour is Ann Jackson. She's the executive director of Oregon Hospice. She is retiring this spring after years of working with Oregon, and Oregonians, to help people in their dying days.

According to Jackson, Oregon has the highest in-home death rate in the nation. And the lowest in-hospital rate.

Do you want to die in your home, able to watch the flowers bloom? Have you helped someone through their last days? Do you believe in hospice-- or hospital care?

Photo credit: Daniel Doman / Flickr / Creative Commons.

GUESTS:

Tagged as: dying · hospice · medicine

I have a very good friend who recently was diagnosed with terminal cancer. She has been through so much torture from what she calls, "science experiments". Now the doctor she has doesn't really do anything. They bring her in drain out contents from her face and send her home. She has now developed what I think is a very unhealthy addiction to pain pills. The doctors refuse to give her any and the road has been really ruff. The doctors don't seem to want to help address her addiction, nor do they want to find a better aproach to the problem. My friend is not an addict. Well not normally. She is in pain 24/7 all in and around her mouth. This leads to her skipping many meals. She started by taking vicodines 30 minutes before a meal. Next it lead to her not being able to sleep with out taking something. Now it has developed to multiple pills a day with her having a complete anxiety attack if she is not sure where the next dose is coming from. I sent emails to different cancer orginazations trying to find a resource to help. I was lead to Hospice Care. They can truly help my friend in ways my life will not allow the time for. I convincered her to give it a try. Well she was crushed. She can have Hospice Care only if she gives up her current treatment. That is a horrid catch 22. If she wants help with her pain management she has to give up any chance of getting better. I don't find that humane in the least. Well now the doctors have diagnosed her with Cachexia. Now that I understand the disease, I don't understand why the doctors are not doing more. I think that if the doctors are not going to be doing a whole lot for total patient health care for the terminally ill; the government should at least allow a patient to seak both. A person with little means still has the right to die peacefully and with grace. My friends current doctor doesn't even try to give her peace. They sent her to a grief person that told her to just accept that she was going to die. They offered her tranqs because they feel she should be in bed resting all day. That way she may live longer. Who wants to live longer if you are imprisoned to your bedroom.

Melville —
I helped my mother-in-law pass February 14th. The hardest part may have been seeing what she saw: that it was her time. I spent one night telling her stories to take her mind off of pain until she was allowed more morphine. Once the family transferred her from the hospital to hospice (in a wonderful nursing home) she was made comfortable and finally received enough medication for pain. Useless treatments were stopped and the focus changed from utilizing medical procedures to help her to helping her by allowing her to die with dignity. Her family stayed with her overnight her last three nights, and let her know she would never be alone. We gave her permission to die when she was ready. Hospice provided clergy and a social worker to help the family work through issues around the end of life. While the social worker was talking with my husband and his sisters, I sat with my mother-in-law and noticed the change in her breathing immediately preceding her death. I ran to get the family and we stood around the bed, taking turns to wish her a loving goodbye. She died, surrounded by family. It was a peaceful moment, one that left us all relieved and grateful.
LeslieWhat —
I started "No One Dies Alone" in 2001 at Sacred Heart Medical Center in Eugene OR. The sole purpose is to provide an end-of-life companion for those without family or friends who are dying in the hospital. I believe it is an honor to witness the birth or the death of another. We all want a pain free death at home with family and friends, that is not always possible, but we can continue to try to make it so. Sandra M Clarke, RN
Sandra M. Clarke —
Both my mother and father died at home, having been under hospice care. I am both fortunate and blessed to have had the resources & support (financial & emotional) that allowed me to participate in their care, and to be present at their deaths.

I was my mother's primary caregiver for six weeks. Although I was not my father's primary caregiver, I was present during his last days, and did not leave his bedside during his last hours. It has been my observation that dying at home allows the dying person great comfort & dignity. Participating in a loved one's dying process helps begin the grieving process. One striking difference between my mother's and father's deaths is that my mother died in a hospital bed in her living room. My father died in his own bed, with his wife lying beside him. There was something very comforting about having him in his own, comfortable bed in his beautiful bedroom. My siblings and I all agree that if my mother had been in her own bed we would have layed beside her during her last hours.

When my father was ill, he also suffered from dementia. A move into the hospital would have been frightening for him. He would not have understood why he was in the hospital, and would have felt abandoned, lonely and afraid.

When my mother was ill, I took a leave of absence (OFLA/FMLA) from work and moved into her home. My employer and my husband & family supported my decision. I was able to use paid sick leave, according to my employer's policy.

I have never regretted my decision. Although it was one of the most rewarding things I have ever done, it was also very difficult. Many evenings felt very lonely, sitting in her house while she slept. (I was in California, my husband home in Oregon.) The days were easier, as there were people in and out all day long. Probably the most rewarding moment was when, a couple of weeks before she died, she said, "I feel so loved. I feel so safe." I couldn't have asked for more affirmation that I was doing the right thing.

By staying home to die, my parents lived their last days as fully as they were able. They were never alone, and with the support of hospice, received excellent, loving care. If it is within my power, none of my loved ones will go to a hospital or nursing facility to die. I hope my loved ones can do the same for me when my time comes. For my family and me, dying at home, surrounded by loving family and friends, is truly death with dignity.
Bonnie Ryan —
My sister Donna died in a hospice in 1999 at the age of 54. She had battled Leukemia for several years and, although her body was wasting away, her spirit was alive and well (thanks to her positive nature and the love and care she received from the staff at the hospice center in Vancouver). The staff let her sisters bring in a cake for her 54th birthday, but she was the one who reminded us that lighting candles probably wouldn't be such a good idea considering the fact that she had an oxygen canister nearby. She was encouraged to eat healthy food, but Donna got me to smuggle in Sees chocolate so she could hide it under her pillow and eat it when no one was looking! I will forever be grateful the the selfless people who staffed the hospice during her stay.
Judy Jensen —
I have been honored to be present at the transition of my mother, neice and nephew. All were fortunate to have been supported by hospice. I have both wonderful and grueling stories of the time I spent with my mother before her death. I wouldn't trade the experience for anything as I am sure that her last months were easier on her. She was able to be in her home, with her husband and family near her. It was not only easier on Mom, it was easier on us, as well. We could support each other in an environment of comfort; an environment we could mostly control. Of the many things I learned from this experience I take away that we can do anything. We can administer complicated medical procedures, dressing changes, and medicines if we have to. We can laugh through situations once seen as only dire. We can appreciate the process of dying while maintaining one's dignity. Hospice allowed our family this opportunity and I am most grateful.
kkalimanis —
I am a hospice nurse. We are strangers to death. As more of us die blessedly in our homes, the culture of fear will recede, allowing us to see timely death as what it is--a universal experience as beautiful, significant, and unifying as birth. Death is never what we see on the screen; we all exit in our own way. Hospice can assist us and our caregivers assure that this exit is made in comfort and with dignity.
rilhogan —
My wife, Gail Whitney, was diagnosed with a particularly nasty variant of Parkinson's disease, she lost the abilities to speak and to walk or eat without assistance. But she did not lose her abillity to recognize friends and smile at the antics of grandchildren. After an active life (she co-founded the Saturday Academy science education program that's helped over 100,000 students in Oregon and SW Washington), she was emotionally devasted by the prospect of loss of all control of her life.

Several family members felt she'd get the best and safest care in a facility with 24-hour nursing care. While still able to talk, she first dealt with the blow of finding Parkinson's patients aren't eligibile for Oregon's Death With Dignity law and then made it clear she preferred to stay at home.

Thanks to wonderful doctors, caregivers, family, and friends and the supervision by Adventist Hospice, Gail has continued to have moments of emotional sunshine in an unpromising circumstance.

A week ago, one of her caregivers, Annie Wood, arrived in time for me to leave for work. Gail's smile on seeing Annie invited the attached snapshot.
RustyWhitney —
I lost my husband to a brain tumor 5 years ago. When we discovered that he had only months to live, he told me his wish was to die at home, surrounded by his friends and family. He was a strong 43 year old man, who knew he would not get to see our 3 year old son grow up, so he wanted every moment possible at home with us. Thanks to hospice, we were able to grant him this wish. Even though I was my husband's primary caretaker, they helped me through every day (and sometimes nights), supporting both of us, and our loved ones by arranging for a hospital bed, assisting with medications, arranging for counseling, holding my hand. On the day he died, he was in his own home, with the love of his family around him. I could not have done this without hospice. Please make sure to encourage your listeners to consider not only their annual financial contributions to research institutions that fight the diseases that take our loved ones away from us too soon, but also to those that help them and their loved ones during their last days together.
Libby R —
So glad this topic is airing! I support consciousness ALL around death, including care of the body after death. I think it makes sense to plan for a death just like a birth...and to harvest all the benefits of healing and spiritual growth that are ripe for the plucking in an experience like this. I also like to encourage people to plan for their own funeral...and for how their body will be cared for until it is buried or cremated. I'm an artist who makes beautiful burial shrouds ( a ceremonial garment for the dead) and encourages people to care for their dead at home. I've been a hospice volunteer as well as taught lots of folks about home funerals and after-death care of the body. Hospice workers are very well placed to help with this if they are so inclined. The 'line' is a little unclear as to exactly when and where Hospice care ends. It can be extremely reassuring and helpful to the family to really 'receive' the death if they are part of the bathing and dressing and preparing the body for a home visitation or memorial. Many people are under the mistaken impression that it is not legal to care for a body and create a funeral at home but it is. I'd like to see more discussion on this...and I'd like to do some brainstorming about how Hospice can be more involved in bringing this compassionate option to people they work with.
I'm so glad to live in a state with such a forward thinking populace!
Marian Spadone
Marian Spadone —
On March 10th it will be three years that my dear mother passed away from non-smokers lung cancer. She lived in New York and I was blessed to spend her last week with her. She died at home with my sister and father by her side. It was the most intense week of my life. It was such an amazing and emotional event on so many levels. Being with my mother during her last days has had a profound change in me and has enabled me to reevaluate what is truly important in life. The hospice nurses were a great comfort to us all. They helped us keep my mother comfortable and gave us great strength during the week. I think there needs to be more discussion about death and dying and this program is a great start. Hospice is a great program that provides the needed support for families. They are the doulas for those who are dying and their families.
AnnaLouisa —
As a Registered Nurse within a large four state insurance company I review and give authorization for hospice's medical necessity. There are abuses of the hospice service but most are very legitimate and services very needed. Often times, I will open the hospice patient to case management and collaborate with the hospcie service to ensure the member gets the services they need at the end of life experience. Surrounding the patient and most of all, the family with a support system to tab into when questions or problems arise.
Adam- RN —
I hope you will clarify that, while hospice is provided in the home, hospice providers do not provide 24 hour custodial care. I've worked with many families enrolling in hospice from the hospital, and this is a common misunderstanding.
charis —
My gran was diagnosed with colon cancer and finally died in August of 2007. She chose hospice so that she could be at home, surrounded by her family rather than in the hospital. We spoke at length about her life and whether or not she was happy. She stated she was content with the life she had lead and was ready to move on. I supported her decision. She wanted to beat the cancer naturally, and when she found out she couldn't, we made arrangements for her to receive hospice. Her family was around her when she died. We all deserve to be comfortable in such a vulnerable state. We should all be able to die with dignity.
real-tomato —
I have been a Physician Assistant for about 4 years. I found it very difficult to bring up death with my patients initially, afraid they would think I was giving up on them. With the help and guidance of local hospice nurses and physicians I found that end of life care does not mean you stop treating, you just change the focus of your treatment. We may not be able to cure, but we can always heal. That is something most people are willing to discuss.
sbmst2 —
I keep hearing on your show, the term "physician-assisted suicide." However, the Oregon Department of Human Services has rejected this term, instead adopting value-neutral language for describing a mentally competent, terminally ill patient?s decision to access the state?s Death with Dignity Act.

Cancer patient and Salem resident Char Andrews told the National Press Club it is ?an insult? to her fight against her illness to call the choice she wants ?suicide.?

Let's please use the accurate and respectful language "aid in dying."
igreenfield —
I can't agree with the above statement on physician-assisted suicide. As a hospice worker, I have witnessed many interventions by physicians that relieved pain and gave the patient aid in dying. I have also witnessed physicians authorizing the removal of devices which were artificially prolonging a person's dying process. But neither of these instances involved intentionally assisting the person to take her or his own life.

If we're to have an honest discussion about this issue, it's incumbent upon us not to obfuscate the subject by calling it something other than it is. If the term "suicide" troubles people, perhaps they should ask themselves why, rather than attempting to substitute misleading euphemisms for the act of taking one's life.
Lar5987 —
I want to support [b]igreenfield's[/b] comments on the importance of using the correct terminology in conjunction with Oregon's Death with Dignity Act. However, I was dismayed to hear Emily frequently use "suicide" during the program. It conveys prejudice against the act whether intentionally or not. The most important benefit of the program is that it gives the individual a sense of control that enables them to go through the dying process with dignity whether they actually take the prescription or not.

I'm a strong supporter of "Think Out Loud" and our Death with Dignity Act. Thanks for having an excellent discussion on dying.
Anne Whitaker —
My husband of 33 years passed on at home 5 years ago after 20 years of kidney failure and luckily never had to go into the hospital as were his wishes. Our small family of 3 assisted his transition with hospice. We were able to take care of him ourselves for the most part once we had the right pain meds which did take a while to get. It was a very spiritual experience that only confirmed his lifelong knowledge that life does not end with the death of our bodies, and our family worked as one 'midwifing' team to assure him that we would be 'ok' and he could move on, he was so devoted to us. Last year, my mom of 91 years passed on at home as she wished with 2 of us sisters there with hospice. Here, it was more complicated; we had problems getting her admitted into hospice, and that didn't make sense, given her condition and old age. We had no nurses when she was discharged, and my sister had no former hospice experience at home. It was very difficult until we got the admission from hospice; I was confident we could give our mother the best care, but my sis was afraid, exhausted and doubtful and that made it difficult. We were able to assist our mother at home to have her wish, "a happy death" and I know she was pleased. Death is so much like birth, and we are better human beings for experiencing both, and need to regain that power in our lives for ourselves and each other. It's not perfect, we don't have enough nurses, and that's why it's important that we recognize that we have the power to do this, provide loving care and pain management for dying. Too many are dying alone and in pain.
mskathleen —
Right before my husband was diagnosed with terminal cancer, there was a book review in our local paper. "talking about death won't kill you", by Virginia Morris. I used this book as a bible throughout his illness. I would recommend everyone to read it.
JaneLeider —
I was honored to help hospice my Mother last September. She had little mental capacity due to the advancement of Alzheimers, but I could always make her laugh. Due to a fall and complications she decided that she did not want anymore food or water. In the final 13 days of her life she was never alone and the hospice providers were magnificent in there guidance for all of her children. There was never a day that went by when I would question if I could make it out to see her. I was filled with anxiety about seeing my best friend and mother leave me like the tide going out to sea. But when I walked into her room my soul was washed over by a wave of love and deep connection. We wondered how she could hold on so long and decided that she was waiting for my brother, who lived in Montreal. I called him and it took him 5 days to arrive. On the day that my Mom passed she was unresponsive. However, when my brother arrived at 2:00 PM, he talked to her and said she could let go. We sang and read poetry and prayers and my beautiful Mother slipped away within an hour after his arrival. I know that she could feel that her 4 children were there and though I will never forget my own anguish at the final moment of her passing, I would have regretted not having been there. I want to encourage anyone that has the opportunity to hospice or share in a loved ones final days, to find the power within and spend those final moments if you can, you will not regret it.
susan58 —
Question for Ann Jackson -

Please explain the important role volunteers play as part of the hospice team in contributing to the quality of patient care and how one can become a hospice volunteer.
Sandrapm —
As a Hospice volunteer for the past 5 years I want to say thank you for having this program on the air today. Each Hospice patient is eligible for a volunteer to provide respite for the care givers and I have been honored to participate with many families on their journey towards death.
Please let your listeners know that Hospice services includes respite care.
Thank you, Jo Ellen Osterlind
joellen —
My mother passed away three weeks ago, from brain cancer. With the help of hospice, we were able to keep her at home. Her death was a beautiful, peaceful, and sacred experience -- much like the birth of children. My sister, a friend, and I were with her as she died. We were able to bathe her body and dress her after she passed away, and kept her body with us as long as we needed. We couldn't have done this in a hospital. While we miss her desperately, her dying at home helped us cope with losing her.

bnelson —
My daughter (2003)had colon cancer which spread. She knew she was going to die, but was calm because as she said to a church circle of friends "I know if the pain stoo bad I'll have the "suicide pill." A few weeks later it had gone to her brain.

When we asked the doctor about implementing her decision, it turned out that he did not believe in assisted suicide and had not started the paper work. And had not referred her to another physician. We called George E of the Commpassionate Friends (not sure of the name), and they began the process but by that time she could not sign to have her intent carried ou. Even if she had, she could not swallow any pills.

The disease progressed rapidly, she began to have convulsions, was taken to the hospital where she was in convulsions for 2 days while wetched helplessly. Her doctor did not come in to see her despite our requests.

Finally, the nurses called in the pharmacist of the hospital. He stood at the foot of the bed and watched her. He said he was going to call the doctor and ask for permission for some "heavy-duty" meds, but that we should know that the meds might suppress her breathing. We said yes. Some hours later the meds were administered and she died soon after.

There is a catch-22 in the wait period. You have to make the request while you are still "competent" (and able to swallow a med by yourself.
But in the case of brain cancer there might not be time to remedy a request the doctor refuses. Yes, she did have hospice in the home and then in the hospital.

Ginny Foster
gingame —
My dad just died at age 91 one week and one day after being diagnosed with lung cancer. Before Hospice arrived, he was in a lot of pain, with much anxiety and unable to sleep. Hospice was a godsend. I am so thankful to them for managing his pain and anxiety and allowing him to sleep. My husband and I were still enjoying my dad's wit and humor 5 days before he died. Three days before he died he told me he hoped he would go fast. He did go fast.

I think some Dr.s have a hard time diagosing a terminal illness - they thought my dad had pneumonia in December and gave him antibiotics. He suffered bad pain for about 13 days before the Drs finally diagnosed him and got hospice involved.

Many thanks to all the Hospice workers. Nancy Monroe
nancyfmonroe —
My husband became a patient of Hospice by recommendation of our PCP. He was living with ALS and the disease was moving throughout his body in record speed. Intially, I resisted Hopsice because I didn't want to think that he was going to die so soon. I had hope that the disease would level off and give him more time. It didn't. Hopsice came into our lives and until the day he died, we had people in and out of our house making his life and mine more manageable. It was a relief to me knowing I could call Hospice 24/7 and indeed I did. Assistance came anytime of day or night. They were competent and compassionate. Once my husband was no longer able to chew food, he made the conscious decision to stop all sustenance and take a minimal amount to water. From that day on, he appeared to be at complete peace and died without pain one week later. Thank God for Hospice.
Kathryn Koelling —
I am a Family Physician and Hospitalist and have attended patients in hospice care throughout my career. I am aware that some physicians are reluctant to make hospice referrals, and many patients and families are reluctant to accept or even consider hospice services, because of the issue of "giving up hope". Eligibility requirements for the Medicare Hospice Benefit include a prognosis of less than 6 months and forgoing any curative care. Giving a prognosis is always a guess and doctors are loath to underestimate. Often, patients have severe untreated symptoms, but are not through with curative care. To address the needs of these individuals, hospitals across the country are developing "Palliative Care" programs.

The idea behind palliative care is to use hospice style focus on relief of symptoms and maintaining quality of life, but extend that philosophy to all seriously ill people, not only those who are dying. We are in the process of developing such a program at Silverton Hospital. Ann Jackson stated on the program that "There is no excuse for anyone dying in pain." I hope to see a society that recognizes "There is no excuse for anyone living in pain (or intractable nausea, anxiety, etc.)"
Dan Harris —
I happened upon the last part of the "On Dyig Well" program the day after the memorial service for my mother, who like my father had been in hospice before her death. I was grateful to hear this topic being discussed in depth; however, I must say that in all concersations I hear about hospice, there is a major issues that I NEVER hear brought up:

With hospice, for good or bad, you are bringing the moral, religious, and dying-preference views of your hospice provider into the equation in a very real and intimate way.

My father underwent hospice in the home during the last few weeks of a long and painful battle with cancer. Near the end he was delusional, disoriented, and (judging by the cries of pain) in great discomfort. We had had morphine prescribed, but the hospice person would let him have it only sparingly, pointing to both its addictive properties and the potential for overdose. Under the circumstances, neither seemed like an issue worth keeping pain medication away from my father. However, this particular hospice nurse and coordinator were very clear about their moral duty in this case.

Due in part to that experience, my mother was very careful about stating her wishes about hospice care to anyone and everyone upon learning that her ovarian cancer had metastasized into her brain. Even with this, however, my family found ourselves having to constantly negotiate (often unsuccessfully) with hospice about her care.

For example: In the last week of her life, our hospice nurses switched to having a ?thickened only? water policy, so that she would not risk choking. My mother did not like drinking it, saying she would be fine with choking, and was constantly requesting regular water instead. In addition, she wanted to wave off having anti-seizure medicine, because she was hoping that some natural cause like a seizure might claim her before the cancer had eaten away all of her memories and cognitive abilities.

The issues above stemmed from a differing opinion about whether insisting on thickened water only and a forcing of anti-seizure medication was ?life-prolonging intervention,? (my mother?s view), or that allowing regular water and no anti-seizure mediation was ?death hastening? (the hospice people?s).

Bedridden and weak, my mother lost both of these battles with the hospice professionals.

I do not mean for any of this to be taken as an anti-hospice argument; I am still a great believer in the concept and philosophy. I do feel however, that people should be more aware ahead of time that when hospice professionals are brought in, those people?s wishes, desires and views of right and wrong can compete (and sometimes take precedence over) those of the patient and the family.
Rtkelly —
I very much appreciate your comments, and I'm very pleased you tuned in to "On Dying Well". Of course, an hour is a very short time for such a large issue. I invite you to go to the Oregon Hospice Association's website at {www.oregonhospice.org/}, which is currently being updated. Or call us at 888/229-2104. You can join us in our efforts to help people understand what we can realistically expect at the end of life.

I'm pleased that most of you have had good hospice experiences. I offer my apologies to those of you who have not. We'll try to do better.

Some responses to your comments:

1. Volunteers do indeed play a very important role in the direct care of hospice patients/families. Every hospice uses volunteers and every hospice provides extensive volunteer training, so that volunteers are prepared and comfortable in the patient's home. Volunteers also play an important role in hospices and at the Oregon Hospice Association. We always have more work to be done than qualified people to do it.

2. Hospices are reimbursed by Medicare, Medicaid (the Oregon Health Plan), insurance plans, and private pay. But they also rely on the generosity of donors to make up the difference. The Oregon Hospice Association relies on public contributions for 75 percent of its annual budget. I can assure you that we put every contribution to very good work.

3. There is an information gap that can get in the way of a timely referral to hospice. Patients/families often wait for doctors to tell them bad news, assuming the doctor will let them know when they need to hear it. Doctors wait for patients/families to ask, letting the doctor know that they are ready to hear bad news. These are not easy conversations at any time.

I recommend that people give their doctors permission, early in the doctor/patient relationship, to talk openly and honestly about their condition. To tell the truth. Or to NOT tell the truth. I recommend that people ask their doctors about his/her preferences, too. How will he/she manage pain? Respect your wishes, if you do, or do not, want certain treatment.

4. 80 percent of Americans would want to know that they have terminal cancer or a limited life expectancy. They may have things they want to get done, for instance.

Health care workers worry that they will take away hope. They mean well, but what they may really be taking away is an opportunity to live the last months and weeks of life in comfort and dignity.

5. Many Americans are concerned about being hooked up to machines and kept alive, when there's no hope. We sent hundreds of advance directives to people when Terri Schiavo's feeding tube was to be disconnected. You can download an advance directive from our website.

There are many mixed messages. When doctors agree to another round of chemotherapy or radiation or offer artificial hydration and nutrition, patients/families believe that there is a chance. And usually there is! But an unpublished study on our website revealed that people who were referred late to hospice were more likely to have experienced (1) an unnecessary crisis resulting in a 911 call; (2) curative treatment that added nothing to quality or quantity of life; (3) increased pain and other symptoms.

6. There is no reason for anyone to die in pain. Dying Oregonians, in fact, have a right to comfort measures at the end of life, including medication. Most pain can be relieved effectively, although a few people may require sedation to make them unaware of distressing symptoms. Sometimes tradeoffs are required between being alert and being free of pain.

7. Nor is there a good reason why people who are still seeking treatment should suffer discomfort. Why should someone have to wait until their last six months of life to achieve comfort? Most hospices and hospitals offer palliative or comfort care.

8. Again, we need to know how to advocate for ourselves and our families. Ask your doctor, or your loved one's doctor, to make a referral to a hospice or palliative care team for an informational visit or a pain consultation, if there's a decline in health. Hospice workers are uniquely qualified to identify signs that life is nearing its last stages. Call a hospice, if you don't have a doctor. Many can help a family find an attending physician.

9. Don't say "no" to hospice, until you learn what it is hospice has to offer! Hospice is for people who are estimated to die in six months or less. There is no limit to hospice care, however. Even people who are in denial have a right to hospice.

Hospice is a win/win. If people get better, they will be discharged. If they don't like it, they can leave hospice care. If their condition changes, or their mind, they can be readmitted immediately.

To those of you who have lost a loved one, I offer my condolences. And I thank you for your interest in end of life care.

With all best wishes,

Ann Jackson

Ann Jackson, MBA
Executive Director/CEO
Oregon Hospice Association
Ann Jackson —

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