Oncologists verses Hospice

One of the benefits of being an Oncologist is that, as a rule, people appreciate our work.  That does not mean they want to hear about our day and the response when someone learns my vocation is rarely “Hey, that’s sounds like fun!”  Nonetheless, at least there is a modicum of respect.  However, I found a group of people with major questions about the work of cancer docs or at least how we do it.

Last week, I attended the 25th Anniversary meeting of the AAHPM, the American Association of Hospice and Palliative Medicine.  This was a first rate, extremely well organized, cutting-edge convention of thousands of doctors, nurses, social workers, pharmacists, administrators, leaders and researchers, who devote their lives to quality chronic and end-of-life care. They discussed the latest research, health policy, presented new ideas and networked around this vital area of medical care. I attended a very cool New Orleans style mock funeral, 6-piece brass band and all.  However, as one of the few oncologists present, I can say that as a group the AAHPM crew are highly critical of my specialty and I must conclude it is our fault.

The reality exists that oncologists are not likely to have early discussions about end-of-life planning or share with their patients honest prognostic data.  In the guise of preserving hope, we tend to provide treatment in lieu of information and rarely will we give the option of doing nothing. While almost half of those dying in America last year were on hospice, too few of them were cancer patients and they were often referred late. The average hospice referral occurs when the patient has less than 20 days to live, even though the hospice benefit gives at least six months of support.  In fact, a large number of cancer patients receive chemotherapy in the last two weeks of their lives and a disproportionate number die in hospitals, instead of at home.

Hospice and palliative care physicians would say that the oncologist should be having honest conversations regarding life planning, from early in each case, asking whether patients would wish to be supported by machines, what goals they have for the remainder of their lives or at least suggest completing an Advance Directive (AD).  Oncologists, who apparently believe the word “die” contains four letters or has the power to kill, tend to focus on getting their patients safely through each treatment, and they would say that too early end-of-life discussions are tantamount to giving up.

The problem is that when we do not plan, especially for the inevitable, we risk chaos and unneeded suffering.  A dangerous gap of information occurs when we only discuss disease, diagnosis and therapy and do not review side effects, alternatives and long-term desires.  Patients fall into this chasm of absent communication and experience pain, fear, and lost opportunity.

Palliative medicine and hospice offers to each patient the opportunity for improved life quality and the chance to live better and longer.  Oncologists need to learn that it is possible, and in deed preferable, to have very early discussions about end-of-life choice.  Palliative medicine practitioners must be sensitive to the goals of oncologists, who are trying to extend and improve life by directly attacking the disease.  These two specialties have a lot to teach each other and patients.  We must honestly communicate with each patient in order to achieve the quality of life they deserve.

13 Comments

  • Amen. I hope I live long enough to see a patient's primary care physician, oncologist and hospice provider working together WITH the patient. The rising number of hospice agencies in my area tells me that hospice care is becoming more acceptable and that is very good progress. Sadly though, some for profit hospice companies are just that - "for profit."
    • James Salwitz, MD
      Your observation regarding the "for profit" model casting a negative influence is interesting and disturbing. Many HPM people with whom I speak also blame profit for the delay of oncologists in refering patients for EOL care. While personally I do not think that is really a major factor for the cancer doc, clearly the impression of medicine for money must be addressed if we are going to deal with this issue. Thanks for your thoughts, jcs
      • I've personally have never witnessed or thought that oncologists would delay EOL care for profit.
        • James Salwitz, MD
          Neither have I ... in fact I find the concept not only disturbing but deeply insulting. However, it was an idea I heard several times at AAHPM. I guess sometimes there is a tendency to assume the worst when someone else is not doing things right. jcs
  • Dr. Salwitz, your advocacy on behalf of hospice and palliative care is inspiring. Your messages are compelling and compassionate. And you speak the truth! My family experienced the gift of hospice for three months after my mother's terminal illness reached the point where quality of life rather than quantity of life became the paramount objective. It was an extraordinary experience. Out of profound gratitude, I now find myself on a personal mission to spread the word so that more families seek or welcome this option -- one that makes the unbearable bearable not only for the dying patient, but also for her family. Too many people don't know what hospice is, and just as many think it is something it isn't. Because of an oped I wrote in the Hartford Courant in January, I was invited to testify tomorrow (3-20-13) in CT's legislature, where an assisted suicide/right-to-die bill has been introduced; I will argue that a compassionate end-of-life option (hospice) is already, and readily, available. You may find support for your own advocacy on the pages of the memoir I wrote to share my family's yearlong experience with terminal illness and, in particular, our determination to inject living into my mother's dying. We succeeded. Massachusetts General Hospital oncologist and Harvard Med School asst. professor Lidia Schapira, who read my story, shared this comment in reaction: "As an oncologist, I’m often left wondering how my patients live their ‘real’ lives outside of my office, how they fill their days and what they talk about and hope for. Linda Campanella filled in those blanks." If you're interested in reading, the title is When All That's Left of Me Is Love (2011).
    • James Salwitz, MD
      I am thrilled to hear that my words have resonated with such a vocal advocate in this area. I am glad your drive came from a positive experience with hospice care. As per my own Blog on Nov 12, 2012, "Why not choose death",(http://sunriserounds.com/?s=Suicide) I too believe that palliative medicine and hospice offer a powerful alternative to end of life decision making and worry about the influence of the assisted suicide/right to die movement. I have ordered your book, and look forward to reading it. Thanks, jcs
      • Thanks! Please let me know what you think about the book once you've read it. I'd value your feedback. (More info: www.lindacampanella.tateauthor.com). FYI, earlier today I posted a link to your article (with a few words of praise and appreciation) on both my Facebook and LinkedIn pages, where it is being seen and also spread by others wanting to share it. One person just responded with this comment you'll probably be pleased to read: "As someone who has watched two family members die of cancer I am very happy to see an oncologist thinking this way." Thank you for what you are doing.
  • Angela
    I am so very pleased that you see the value of Hospice & Palliative Care. My Grandmother died this past January. She suffered from severe dementia & osteoporosis as well as many other medical problems. We have an AWESOME Community Hospice in town that supported both my Grandmother & my Mom and me during the last days of my Grandmother's life.
    • James Salwitz, MD
      I am very happy the hear that despite a tough illness, you received the support you needed from a first class hospice. What do you think was the most important thing in the care they gave that made you believe your Community Hospice was AWESOME? jcs
      • Angela
        First of all,I am a R.N. so that gives me a different perspective on everything that goes on with regarding wellness/illness. Our Community Hospice was AWESOME in the care they c gave my Grandmother. They talked to her when they were caring for her,there was always a R.N. available to advise me how to deal with different problems such as agitation,pain, excess pharngeal secretions. We had an on call R.N. come out to our house 3 nights in a row to deal with situations in which we,as a family,needed help. It wasn't that I hadn't with dying pts. before. I have. The difference is in critical care we are using every means we have to save our pts.,and probably more importantly,I am not related to my pts. in critical care. For us as a family,I think the social worker was the most important part of the AWESOME Hospice Team. The social worker was able to talk with my Mom and me about the fact that our mourning would be different because my Grandmother's dementia had robbed her of the person she used to be.She also helped me understand that the last period of severe agitation she experienced which was very difficult for me to endure was a fight/flight response,and that if we had followed her wishes during that period we would have been going against the wishes that she had made known when she was in her right mind. This conversation with the social worker gave me much peace. This is why I believe we have an AWESOME Community Hospice. I also love your column.
  • [...] cases, can prevent a patient from doing more important things and enjoying life. In a related post, Oncologists vs Hospice, he comments on the need for oncologists to have earlier end-of-life discussions with patients to [...]
  • D Someya Reed
    Two questions and a hope... 1) As an oncologist yourself, what do you think of an oncologist serving concurrently as medical director of a hospice...easy, difficult, good idea, bad idea? 2) Based on my own experiences, I can agree with you that oncologists don't tend to discuss end-of-life planning but from there on we differ. Oncologists I have dealt with like to come out guns-a-blazing. They want to throw everything including the kitchen sink at you. They are not hesitant at all to share prognostic data with their patients. I do have to agree that they do not accept a patient's refusal to accept treatment very well. Some have met this hesitation to accept their proposal by adding a comment (meant to entice the patient?) on how much they stand to learn by that patient's death. I'm neither exaggerating nor making this up. The question then is...Are there that wide of philosophical differences in medical school's training in oncology? Based on your posts, yours seems nothing like this at all. And...although I am familiar with a New Orleans style funeral, please tell me that this was not a function of the AAHPM meeting.
    • James Salwitz, MD
      - I have served as director of 3 separate hospices, at different times, while practicing oncology. It gives a great sense of perspective and provides personal balance. I recommend it highly. - I think oncology has historically neglected end of life training (the books are full of data about cancers that kill most patients, but say nothing what to do with all those dying patients). This is clearly changing as most oncology programs are requiring and supporting rotations and training in hospice and palliative medicine. I think there are indeed variations in the orientation of different programs and even different departments in the same program. As to the statement "how much they can learn by a patients death" I hope that someone puts me out of my misery if those words ever come out of my mouth. -The New Orleans style funeral was at AAHPM, but was not a true individual person's funeral but a chance to be involved and mourn the loss of all those patients and friends who have died in the last year. jcs