Hospice Cares, Even if Your Health Care Provider Seems Not To

Gracie, a nurse of 16 years, the most recent 14 of which she has spent as a hospice nurse, told me the story about a patient that she’d had several years ago. Sam had been diagnosed with HIV and it had progressed into full blown AIDS. Sam’s doctors believed that there was no more that they could do for him so he was referred to the hospice care program where Gracie was working. Hospice referrals are reserved for patients believed to be in the final six months of life. Sam knew that his doctors had given up and that he would be dead within six months. The doctors’ seemingly hasty decision to refer Sam to hospice was, in actuality, what saved him. Patients who are near the end of life are sometimes said to be “circling”; as in circling the drain. Sometimes, however, the patient can be a strong swimmer. Gracie recently heard that, after more than 10 years, Sam is still alive and doing well. A good attitude and kind, compassionate care from his hospice nurse allowed Sam to remain strong and retain some quality of life until there was a change in his treatment regimen and he began to recover.

In her time as a hospice nurse, Gracie has treated well over 1000 people.  The youngest of whom was an 18 month old baby named Carter.  He had been born with a congenital disorder.  Carter survived longer than was expected and, as a result, necessary treatments were no longer available.  Once this happened, the progression of the disease became accelerated and the family was referred to hospice.  There was so little time, the hospice staff couldn’t prepare the family, and soon the infant died.

What if?

What if doctors communicated with their patients more about the reality of the patient’s situation?  If the doctor could more easily conclude and convey that there was no viable medical solution to an illness would more people be referred for hospice treatment?  Would a larger percentage of hospice patients recover to the point where they could leave hospice care?  No matter the answer to those questions, the real point is that the breakdown in communication occurs at the physician’s level.

I’ve never had a loved one in hospice care but the doctor patient communication issue is evident even outside of hospice.  I am fortunate in that I have an inside look at the way that hospice operates through the eyes and words of my mother in law who has been a hospice nurse for most of her nursing career.  She allowed me to interview her so that I could understand hospice and the communication shortcomings.  In addition to her first-hand account of communication issues within the medical field, specifically hospice, I consulted peer reviewed journal articles for direction and information.

In 2008 my father died from complications that arose after having a cancerous lung removed.  The last time that I saw my dad alive I wanted some kind of security or guarantee from the doctor before I left Mississippi to come back to Florida.  The doctor told me that my dad was doing better and was improving so I packed my things and came back to Florida just in time to be with my wife for the birth of our first child.  Less than three weeks later my father was dead.

“It’s important to live life” Gracie said as she talked about the role of hospice and patient care in response to a question regarding any specific patient who’d moved her during her career.  She said that there is not necessarily just one person but a combination of all of the patients with whom she’d worked and their families.  She has learned a lot about life and the importance of it.  “Live each day like there’s no tomorrow… there’s truth to that” she said.

Breakdown Ahead

Communication among hospice nurses, staff, patients, and families has nearly been perfected.  The broken cog in the machine is the one that connects the family and the physician.  Doctors have a tendency to do all that they believe can be done and then tell the family something along the lines of “We are going to call hospice”.  To a medical professional this is a clear statement that the prognosis is poor and the patient should begin to make final preparations.  In actuality, many of the patients and families of patients who enter hospice care don’t understand this.  Far too often, according to Gracie, it is the hospice nurse who is charged with actually telling the patient and family how grim the outlook actually is.  The doctors don’t seem to understand that by continuing to provide treatment for symptoms they are denying the patient the opportunity to come to terms with their condition until there is not enough time to have a good death.  The physician does a poor job of communicating under the guise of protection for the patient.  It is not uncommon for the patient’s family to come to the hospice nurse asking “How much time does he have?” and all the nurse can say is “I don’t know” and “What did your physician say?”  Gracie suggests that perhaps physicians could benefit from training on how to better communicate about death.  The general course of many diseases is well known.  Perhaps the physician should offer more guidance and information as to the path of progression so that the patient will have a better understanding of what is to be expected.

Another unexpected result of poor communication between physician and family is denial.  When a patient is referred to hospice soon after a disease is diagnosed then both the patient and the family are often angry and in denial of the situation.  Physicians often see symptoms as cause in and of themselves and treat the “cause” without giving thought to what disease might present in this particular way.  Symptoms can be explained away in relation to myriad situations.  Early disease processes can be overlooked in this way and then, by the time the patient finds out, the illness has been lingering too long to be remedied.

A savvy patient might check online databases to see what diseases might be indicated by their symptoms but this person is not the norm.  It would seem reasonable for doctors to consult a symptom guide of some sort when a patient at risk for a particular disease presents with an issue.  This isn’t always the case.  When asked about this Gracie responded “Not all doctors were at the top of their class”.  Patients have put a lot of faith in what the doctor has to say and not in how they actually feel.  She suggests that if a patient sees a doctor but has a strong feeling that the diagnosis is incorrect they should get a second opinion, and third if necessary.

Hospice is for the Dying

The doctors aren’t wholly at fault when it comes to hesitance in joining a hospice program.  Hospice has gained a negative connotation.  People have been hesitant when the physician finally recommends hospice because they believe that hospice is simply a program set up to give people a place to die.

Too often when a patient enters hospice care it seems as though the hospice agency is expected to take over the treatment.  The palliative care provided by hospice would be far better utilized were it implemented earlier but hospice staff feel as though patients are being referred too late in the advancement of disease.  Doctors, it seems, treat their patients to death; referring 1 in 5 patients to palliative care at the time they receive terminal care (Massarotto, Carter, Macleod, & Donaldson, 2000).  As was found in Steven Pantilat’s study (1999), the average length of stay in hospice care is 36 days but a full 15% of patients referred to hospice die within 7 days (Pantilat, 1999).

There are things that physicians can do to help eliminate the gap between what they say and what patients hear.  They should listen more than they speak, avoid medical jargon which is often confusing for the lay person, and encourage the patient to share his or her values and goals.  Physicians should make a conscious effort to attend to the patient’s family and the impact that the death will have on them (Pantilat, 1999).

Sometimes an adult with multiple diseases or disorders, from minor to major, can receive successful treatment for a short time but then become non-responsive.  This is called Adult Failure to Thrive.  The patient and family can sometimes hear what they want or need to hear from a conversation and then twist facts in their mind.  This can lead to missed treatment opportunities when, if the doctor had been direct in the beginning and explained things to the patient in plain terms then that person could be dealing with the actual situation rather than the perceived one.

Related Research

Patients can get a sense of false optimism from the doctor.  If a patient has small cell lung cancer and the doctor administers treatment that appears to be effective when x-rays no longer show the disease then the patient can receive this sense of false optimism.  What happens then is that the patient loses the opportunity to do the things that he would like when he later finds that the cancer just wasn’t visible and time has, in the interim, dwindled.

A study in the Netherlands found that many cancer patients do not ask for precise information when the prognosis is poor and also, when the physician gives such information the patient and family are likely not to hear it.  What then happens is that the patient and physician collude in a common denial that fosters false optimism (Anne-Mei, Hak, Koeter, & van der Wal, 2001).

A living will is a valuable tool in beginning the conversation about death and mortality.  It could be an opportunity to open the channels between doctor and patient.  Unfortunately, neither physician nor patient are generally willing to talk openly about death and they certainly shy away from initiating conversations on the subject.  It is possible that, for this reason, it wasn’t until 1969 that an attorney, named Louis Kurtner, proposed the living will (Emanuel, 2000).

In the course of treatment of many diseases there is a treatment calendar.  The natural progression of these diseases can be charted somewhat predictably based on milestones in the body’s deterioration.  A common mistake is for the patient and physician to focus too strongly on the treatment calendar and ignore the ultimate prognosis.  The resulting false optimism is the fault of both the physician and patient but the portrayal of blame is generally one-sided.  The doctor is almost exclusively viewed as one who should have known better (Anne-Mei, Hak, Koeter, & van der Wal, 2001).  There is a mental separation between the doctor and his work.  It is by this separation that he is able to keep emotion out of the equation as much as possible.

Richard Boyt speaks about this separation in “The Curtain” (2002).  He refers to the division as a curtain.  On one side of the curtain, the physician and the rest of the medical staff speak amongst themselves in terms that minimize the gravity of the situation.  They do this to help provide a layer of separation between themselves and the patient.  Too much involvement could lead to increased physician burnout and excessive mental health issues.  The separation allows the medical professionals to focus on the symptoms without the context of the human carrier.  It also allows them to use humor and lightheartedness to cope with the strain of carrying the pain and bad news.  On the other side of the curtain the professional is reserved when relaying information to the patient and family.  Often, physicians don’t know what to say because they don’t know how they, themselves, feel (Boyte, 2002).

Through the evolution of the doctor, patient relationship there have been several changes.  Initially, there was little conversation between the doctor and patient regarding treatment options.  The doctor simply told the patient what he believed to be necessary and the patient followed the doctor’s directions.  Between the 1960s and 1980s there was a slow but definite shift in the medical community.  During this time physicians focused on openness and “full disclosure” of information to the patient.  This was, at times, overwhelming and left the patient and family as lost and blind as if they hadn’t been apprised of the situation.  The communication between the medical community and patients shifted again during the late 1980s and 1990s toward a model of “conditional” full disclosure.  This put the doctor in the position of deciding what information was relevant, important, and beneficial to the patient (Field & Copp, 1999).

No matter what communication style between patient and physician is being utilized; the physician often is guilty of not being empathetic enough to the patient and family’s needs.  Barbara Coombs Lee, in an interview, said that the heavy science focus in medical school leaves no time for education in the humanities, which is the basis for developing a sense of empathy.  She continued to say that even physicians who were initially predisposed to empathy lose the gift once it’s been “trained out of them” and replaced with medical facts.  She said “We speak with dying patients and their families all of the time and we have observed a pattern in many of the complaints.  Patients have a sense that their doctors are not really hearing them” (Gandey, 2004).

One indicator that the end of life conversation between patient and doctor has occurred, according to Levin et al (2008) is the implementation of a DNR order.  His study found, however, that most DNR orders are signed on the day of the patient’s death and often by proxy; a full two thirds.  The remaining 33% had signed the order at least a week prior to their death.  Of those, 22% had completed the document more than 30 days prior; indicating that advanced planning had been done in the event of imminent death.  Just over half, 53%, of the DNR orders were signed by “Adults with Capacity” leaving the remaining documents to be completed by patient representatives (Levin, Li, Weiner, Lewis, Bartell, Piercy & Kissane, 2008).

Conclusion

We, as Americans, have become lazy when it comes to our health care.  Many of our health care providers have become lazy as well.  It has become a common belief among people that nurses have borne the brunt of the work and patient care in America.  It is true that in medicine the doctors have gotten less and less involved with their patients.  Information disseminated from the doctor to the patient and family has become technical and full of jargon.  People have a hard time understanding what is happening and the prognoses would just as well be spoken in a broken foreign language.  Doctors are not taking the time to be sure that their patients understand what is being said.  Additionally, they are not ensuring that the family members have sufficient information to help their loved ones through tough times.

Doctors, when referring patients to hospice care, often do so far too late in the process for hospice to be as beneficial as it could.  The purpose of hospice care is to act as a palliative provider.  The program is designed to alleviate suffering and help the patient come to terms with end of life decisions and circumstances.  Too often physicians are referring patients to hospice care when they are so close to the end that there is no time to make amends.  Also, because of the convoluted way in which doctors are providing information to their patients, many patients and families are not aware of the finality of their circumstances.

Whether referencing one on one interviews with hospice care providers or physician authored peer reviewed articles the story is the same.  Not enough time is being given to the hospice providers and the patients’ families to make final arrangements and settle dealings with friends and family.

Gracie told me that not all doctors were at the top of their class so they miss things and gloss over details that they consider to be minute when, in actuality, the information is all equally important to the person who is dying.  There are instances in all walks of life where information is misunderstood but none where the consequences are as dire as they are in health care.  No matter how quickly the mechanic can get to the problem, this is one breakdown that we cannot afford to have.

References

W Richard Boyte.  (2002). The curtain. Health Affairs, 21(4), 242-245.

Emanuel, Linda (2000, Dec). Living wills can help doctors and patients talk about dying. Western Journal of Medicine 173(3), 368-369.

Field, David and Copp, Gina. (1999). Communication and awareness about dying in the 1990s. Palliative Medicine 13, 459-468.

Fiesta, Janine.  (1995). Assessment and communication. Nursing Management, 26(6), 22.

Gandey, Allison. (2004). Actor teaches clinicians to communicate. Canadian Medical Association. Journal. 170(12), 1779

Levin, Tomer T.; Yuelin, Li; Weiner, Joseph S.; Lewis, Frank; Bartell, Abraham; Pierc, Jessica; and Kissane, David. (2008). How do-not-resuscitate orders are utilized in cancer patients: Timing relative to death and communication-training implications. Palliative and Supportive Care. 6, 341-348.

Massarotto, Alicia; Carter, Helen; Macleod, Rod; and Donaldson, Natalie. (2000). Hospital referrals to a hospice: timing of referrals, referrers’ expectations, an th nature of referral information. Journal of Palliative Care. 16(3), 22.

Pantilat, Steven Z. (1999). Care of dying patients: beyond symptom management. Western Journal of Medicine. 171(4), 253.

The, Anne-Mei; Hak, tony; Koeter, Gerard; van der wal, Gerrit. (2001, April). Collusion in doctor-patient communication about imminent death. Western Journal of Medicine 174(4), 247-253.