Palliative Care and Difficult Decisions to Stop Treatment

This Sunday I was struck by the New York Times article titled “Helping Patients Face Death, She Fought to Live,” about Dr. Desiree Pardi, a leading clinician in palliative care who herself became a cancer patient faced with deciding when to stop treatment and when to focus on palliative care instead.

As a practitioner and health care advocate, I have often found myself involved with patients who are at the crossroads of ending active treatment and focusing on comfort care. This article highlights well the personal nature of such a decision. As practitioners, we can provide information and support, but it is the patient who ultimately must choose which path to follow.

I believe that in a situation in which a patient and physician find themselves at odds regarding topics of continuation or end of treatment, a mediator should be consulted to help resolve these difficult issues.  In the best case scenario a medical ethicist or palliative care practitioner should be asked to help to ease the burden that both the patient and healthcare provider are struggling with.  In theory, paternalistic medicine is no longer practiced and as healthcare providers, we are tasked with providing the patient with the education to make informed decisions (choices).  This also implies that a patient is able to make those choices based on free will and a good understanding of the impact the choice will have on their lifespan.  I imagine that as healthcare reform continues to evolve, end of life decision-making will become part of a national debate.  I know that, as a medical provider, I will continue to learn from my patients and their loved ones.

Read the article by clicking here.

5 thoughts on “Palliative Care and Difficult Decisions to Stop Treatment

  1. This article is a fascinating portrayal of the complexities of living with metastatic disease and what goes into the decisions we make for our end of life needs.

    Unfortunately, I believe that the article may not have portrayed palliative care as accurately as possible. It is not a philosophy that tries to influence patients to “accept” their death and to forgo treatment. Rather, it embraces the diversity of patient populations and strives more to support the individuality of each patient. Palliative care is committed to supporting patients’ individual choices and to providing symptom management along the continuum of the illness so that patients and their families can enjoy and achieve the best quality of life for as long as possible.

    Dr. Pardi may not have gone gently into the dark night; but she did so on her own terms; and in the end- her family knew her wishes when she no longer could express them, and honored them accordingly. This is what we all should hope and wish for.

  2. I wanted to share a response to the article by Dr. Pardi’s husband Robert. This appeared in the blog: Pallimed.

    Rob Pardi comments on the NY Times article about his wife, Palliative Care Physician Desiree Pardi
    by Christian Sinclair, MD
    Fri, Apr 09 2010, 09:38 AM

    The recent New York Times article featuring the story of Dr. Desiree Pardi, a palliative care physician with advanced breast cancer prompted a lot of responses on the NYT site (400+) as well as Lyle Fettig’s post here on Pallimed. Last night, we were able to hear Desiree’s husband, Robert Pardi’s view on the article and more about Desiree thoughts, actions and philosophy towards life. With Robert’s permission, I am reposting his Pallimed comment as an original post in order to make sure a more complete picture of Desiree can be understood. Please share his words whenever you see a site, blog, or someone who may not have a rich appreciation for the complexities of her decisions or what palliative care truly means.

    From Robert Pardi:

    I am Desiree’s husband and while I appreciate the numerous comments posted and the fact that this “story” has generated so much discussion, I need to convey that the article was very misleading and that many of the take away messages are wrongly presented.

    My wife, knowing her life was going to be shorter than most spent her remaining years preaching the value of Palliative Care; something she herself accepted in her life.

    The problem is most people lump Palliative Care and end-of-life care as one field of medicine. They are two separate disciplines. Second Palliative care is about providing symptom support throughout all stages of a chronic disease, it is about providing patients with a full understanding of their condition and treatments so they can live a life they want. Isn’t that what it’s all about ?

    My wife never coerced people into ending a fight, she herself believed everyone should make that decision – but they have to know what they are getting into. They need to know the likely effects of treatments such as that from CPR, and know that sometimes getting on a respirator means you may never get off one. She believed in people needing to know the truth and planning accordingly.

    She also believed no one should ever take away or overwhelm your coping mechanisms, her’s being using me as her information buffer (inaccurately referred to as “denial” by many). We had a medical team and a wonderful oncologist for over 5 years who supported her while using me as that buffer. My wife was aware that she would most likely die in agony, and that financially I would be burdened with excessive credit card debt and emotional exhaustion. Yet, we agreed to go that route. I stopped working and learned how to function as a home health aide to support her.

    I was well aware that our choices were setting her up for increased pain that she was willing to endure, but she told me that if a time comes when I need to make a choice to withdraw care that I should remember there is a difference between extending life and extending death. She said that if her body was too sick to be saved, she would not want to be “saved” if she could not function at a high level. We had that discussion, another aspect of Palliative Care – my wife lived and breathed palliative care everyday.

    Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make a decision about how we want to deal with a chronic disease. It is about quality in life and quality in death and tailoring a medical plan to achieve those goals.

    She did not want Palliative care to visit with her in Boston because it overwhelmed her coping mechanisms, because she wanted me to be the buffer – not because she did not believe in it. Note that you are reading quotes from countless hours of being interviewed; their true meaning is lost in this “story”.

    One thing my wife wanted was for people to learn, to discuss, to explore the concept of palliative care based on her illness and I am thankful so many of you are discussing.

    Rob Pardi

  3. Pingback: Follow-Up to NY Times’ article on Palliative Care « Mesothelioma Applied Research Foundation

    • Good Morning, I am writing on behalf of my father Marty who was diagnosed in Sept of 08 with Pleural Meso and now Peritoneal Meso. Mary has been our blessing from God along with Dr. Vogelzang!!! We have made many trips to Las Vegas to get his opinion along with emails and phone calls to Mary!
      Dad is blessed; there are no words to say anything else because only our faith and God can get a family and patient through this. Dad’s last CT scan a few wks ago showed stabilization in the cancer with a decrease in one of the nodes!! Praise God He is showing us He is still in control.
      We have had some difficult times and thought the end was near, but only God can let my dad know when that time is. We have asked dad when you are tired you let us know and we will stop everything. My father is such a strong man, before he was diagnosed at age 75 he would work on their small ranch from 5am to 6pm daily, ride horses, fish, boat and live life to the fullest. Dad’s lifestyle has changed greatly since this December, but not his will to live. He does spend a great deal of his time in bed, he reads, we watch a lot of westerns!!! We all talk a lot about the past, present and the grandkids discuss their futures with him! However, praise God at Easter he wanted to ride the 4-wheelers, we went for a short 20min ride, but what a blessing to see him on that!! God is so good giving us this time, but dad still wants to fight and that is where family and if not family then the help of caregivers to still respect the patient’s wishes.
      We have no regrets of treatment we have tried; we seek Gods wisdom with everything.
      Dad is now very very thin, 126lbs, we are doing all we can to get food in him, his diet consist of 4 insure plus a day and a few cups of soup. This is physically all he can do. With this ugly disease you have to seek the help of people like Mary and yourself to get through it. We knew dad needed more nutrients and with dad having a port we learned how to give dad’s fluids every other day. This helped greatly!! Remember dad is not in pain, has that under control with morphine. He has not been in any great pain, which is another blessing. He just truly feels like he can live a quality of life if he can get some strength back. We looked into a feeding tube but with dad having to have parencetises every other week; the fluid would cause an infection.
      I do have to say, dad was still up fishing, boating and riding the 4-wheelers until October of 09 when he went on a research drug RAD001. This took a tale on dad and we saw a big decline in his health. Like I said previously, we are not looking back just forward.
      We are in a stage now where I have to say life is not easy with this disease BUT with God all things are possible. My sister, mom and I give my dad round the clock care, we go with my parents to all doctor visits, and we write everything down, get copies of all reports and know just when he needs his B12 shot, chemo or what he ate yesterday. This is so important.
      Treatment is still so important I feel if the patient is willing and wants to. Dad is so willing to spend another summer at the lake fishing and boating. He is in the hospital now getting set up on a program that we can give him nourishments (food??) through his port. He is able to get 1600 calories in a day, but this cancer is so greedy and I feel it is taking everything dad is putting in. We are at the cross roads as to not knowing if you put more into dad will he have to have more frequent parencetises? I am sure this might happen, but dad does not want to keep wasting away.
      In closing please pray for us as we are praying for all those families who are living with this disease. I feel the care that can be given to a patient up to the end is so very important and again the wishes of the patient! We truly feel that man can not tell us when or how long our life will be only God knows that!
      In Christ and believing in a Cure!!!
      Joy

      • Hello. I am writing for the first time. I have just been inducted into the Mesothelioma family via my father. He was diagnosed with pleural mesothelioma on July 20th, 2010. I had never heard of this disease before. My father has been to Cleveland Clinic and is going to the James Cancer institute Tuesday to complete his consultation before beginning his Chemotherapy. My father is 74 and was a boiler tender in the Navy when he was 18. He is a wonderful father, husband, grandfather, and my best friend. He loves to golf, but has been unable this summer due to what we had been originally told was pneumonia-we now know is his cancer. I have tried to get him into a clinical trial in Cleveland, however, it seems he is not a good candidate for trials due to his overall health. I feel helpless. I have always prayed and continue to pray constantly-and I am thankful for the gift my father has been to all of us. I pray for his guidance that I will do everything I can to help my father and according to my father’s wishes. Surgery is not an option for my father therefore we are left with chemo. He has developed a severe cough over the last 3 days which often leads to vomiting. We thought his fluid was building back up, and went to have it drained. However, the surgeon after reviewing the x-ray felt the fluid hadn’t changed much and felt it was possibly the cancer. My father’s fear is that we will go on Tuesday for our consultation and they will say there is nothing to be done. Has anyone faced this? I am thankful for your stories and the hope they give. I pray for all of you and your families. God Bless you all.

        Erin

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