Ensuring A Meaningful Life

by Marel Ver, MD

We have a natural fear and aversion to talking about death and dying. The reality, however, is that we, and our family members, will all die someday on an “unknown expiration date,” as I tell my patients

The question, therefore, that I pose to the reader is: What does living mean?

As a surgeon, I do a lot of emergency surgery, often on very sick, elderly patients. I also see patients in my outpatient clinic with new diagnoses of cancer.

I often have the potential to “fix” these issues, but with downstream consequences. The most important question for me to ask patients and their families is: Is this the right thing to do?Palliative care is a field of medicine that focuses on patient- and family-centered care in the setting of advanced disease, serious illness, and end-of-life.

Palliative care does not just mean hospice, and the palliative care specialists are not the ‘death squad.’ It is team-based care that helps to ensure living a dignified, meaningful, and respectful life, knowing that one’s time may be limited.

The focus is on relief from the symptoms and stress of serious illness. The goal is to improve the quality of life for the patient and the family.

Inpatient palliative care specialist Dr. David Kalir mentions that these conversations are important and can take a lot of time.

Intensive Care Unit (ICU) physician Dr. Emilio Ganitano states that having these conversations in an ICU setting are especially difficult because the patient is acutely severely ill with a chance of dying and may not be able to make decisions, nor participate in their own care.

Decisions by patient and family are highly stressful and are often based on emotions, fear, anxiety, and guilt. Moreover, ICU doctors need decisions made quickly because it determines what they can and can’t do for a dying patient.

Often, the family members want to be involved and “want everything done” for their loved ones, but without really understanding the consequences such choices may have.

“Doing everything” can be traumatic and prolong suffering, rather than prolonging life. For example, chest compressions to restart the heart (CPR) can cause painful rib fractures and pneumonia.

Proceeding with dialysis to help clean the blood of toxins may leave the patient feeling even more sick, confused, anemic, and even in need of blood transfusions.

For those familiar with medical care across the Asia-Pacific, an “everything can be done” approach may be fairly limited due to a lack of technology, specialized training, and equipment.

In the United States, however, where medicine and technology continuously advance, doctors can offer a lot. But again, the most important question becomes whether it is the right thing to do for the patient.

For one patient, living on permanent life support with a breathing tube and feeding tube is not meaningful living, and that patient would prefer to pass comfortably.

For another patient, living on life support so that family can visit and be comforted is a meaningful life. We cannot assume either.

It would really help if the patient made their wishes very clear before sickness even happens. Many inpatient (hospital) providers, including myself, advocate that these conversations should start in the outpatient setting with the patient’s primary care provider (PCP), who would know the patient the best.

When I surveyed a few of my PCP colleagues, I was surprised to find that about half of them do not have these conversations with their patients as often as they should.

A real barrier to addressing this sensitive topic is available time, as PCPs now have other things to focus on to meet the performance measures required by insurance carriers.

Further, PCPs also need to balance cultural sensitivity, family dynamics, and not scaring the patient away from seeing the doctor regularly. Lastly, physicians and advanced practitioners in general may have different comfort levels in even broaching the topic.

Family practice physician Dr. Melanie Payanal is a palliative care specialist who routinely addresses this topic with her mainly geriatric (older patient) practice. She starts having these conversations with patients when she begins to see functional decline or increasing frequency of hospitalizations.

Dr. Payanal notes that when a patient’s Alzheimer’s or dementia gets worse, or when a patient is admitted to the hospital for illnesses like heart issues or sepsis, they may never be able to get back to baseline and will only decline more with time.

Therefore, she starts these conversations at least two-three years prior to the patient’s passing. In her practice, about 90% of her patients state that they don’t want to die in the hospital.

It is routine that families are invited to participate in health care planning. She states, “Your loved one is sick, expect more to come.” Palliative care referrals are introduced, “Patient will eventually benefit from hospice.”

Hospice is a part of palliative care that focuses on the patient and family’s needs during the last few weeks and months of the patient’s life. The goal is to provide the best compassionate care and support.

This involves keeping the patient comfortable at home or in their facility. There is no longer a need to go to doctors’ visits, go to the ER, or have aggressive treatments.

The hospice team will adjust care purely for emotional, physical, and spiritual comfort and for quality of time until a natural death comes.

The decision to proceed to hospice is multifold. Again, culture and perceptions on death and dying play a large role. Older patients are more accepting to hospice compared to younger patients, as older patients already have lived a long life.

In Dr. Payanal’s experience, the patient and family often state that they appreciated the support, education, and anticipation for the end of life that palliative care services provided over time.

Palliative care is based on the needs of the patient, not on the prognosis. It is appropriate at any age and at any stage for a serious illness and can be provided along with curative treatment.

Palliative care referrals do not have to come from the PCP office; other specialists can refer as well. Another colleague of mine, cardiologist Dr. Kahea Rivera, routinely discusses and refers her patients to palliative care services when she notices increased frequency of hospitalizations for heart failure. Caregivers and family can also request it directly.

When the inquiry is made to a palliative care group, an intake by a palliative care liaison, usually a nurse or social worker, is completed. Education and resources for the patient and family are provided, as comprehensive assessments are ongoing.

Care is coordinated and communicated. Clinical services are offered. There is a full team to help plan for and provide individualized care, which includes physicians, advanced care practitioners, nurses, chaplains, nutritionists, therapists, and other support staff.

These services value the concept of time. If a patient needs a hospital bed and other equipment for the house, arrangements and deliveries can be made as soon as 24 hours.

These services can happen at an inpatient facility or at home. If a patient lives in a care home, then patient, family, and caregiver decide if these services can happen in that care home. If not, then palliative care services will arrange for another facility.

After referral and prior to hospice, there are also supportive care services, which can be insurance dependent. These are for patients with advanced or terminal illnesses who still want to be treated but need to be supported.

Another aspect of end-of-life planning is the Advance Care Planning paperwork. The palliative care team helps to guide filing the necessary legal documents for a smooth transition after death, which helps take the burden off the families.

It is important to file an Advance Health Care Directive (AHCD), which states your designated surrogate and wishes for treatment, comfort care, and any religious or spiritual instructions.

The AHCD is signed by the patient and two witnesses or a notary. A Provider Orders for Life-Saving Treatment (POLST) is a green form that states one’s wishes for immediate treatment (CPR, intubation, tube feeding, interventions), signed by the patient and medical provider.

The POLST is a mobile order that is active once it is signed. The POLST form is green so that it can be easy to find and can be kept at the patient’s home in an obvious place, like on the fridge, so that when an emergency happens in the home, the paramedics will know how to proceed.

Both ACHD and POLST forms should be scanned in the patient’s medical record.

Your surrogate, “health care agent.” “health care power of attorney,” or the person who will make decisions on your behalf is a tricky topic in Hawaii. In medical school, we learn that the next of kin is the spouse, then the adult children or parents.

In Hawaii, however, where there are large families, extended families, and Hanai families, the “next of kin” by lineage may be inappropriate. It would be ideal if the patient designates and documents a surrogate (patient-designated surrogate).

However, if unable to do so, then “interested parties” (i.e. family members, caregivers, etc.) can select by consensus a non-patient designated surrogate.  Surrogates should be available and be able to make decisions based on the patient’s, NOT the family’s, wishes. The ACHD and POLST should be used as guides.

It is worth mentioning that in my practice, I routinely bring up advance care planning with all my patients 65 years and older, and with those who have a lot of medical problems, as all surgical procedures have a risk of complications. Risks increase with age and presence of medical issues.

Another controversial topic is screening tests like mammograms and colonoscopies. It is not uncommon that doctors tell patients no need to continue screening tests when they reach a certain age.

In Hawaii, where patients live well into their 80s, 90s, and 100s, and are mentally sharp, gardening, and sometimes still driving, perhaps we are limiting care. I discuss this controversy with my patients and ultimately it is up to them whether to continue such tests, because if something is found, they may still be an appropriate candidate for treatment.

I do state, however, that once a patient gets functional or health decline, or keeps going to the hospital, then it is nature taking its course, and we should stop screening tests and focus on end-of-life planning.

In summary, palliative care should be seen as a type of “VIP service” that adds an extra layer of support. The focus is on living. The team facilitates open conversations and provides resources for the patient and family in an individualized manner.

I hope that my medical colleagues take this useful information and apply it to their own practices. Hawaii is a blue zone where people live longer, therefore it is my opinion that having these tough conversations early should be the social norm, so that people can focus on living a meaningful life.

These conversations and documentation should be updated yearly, as health and social situations can change quickly over a short period of time.

I’d also like to empower patients to ask their providers to have these discussions. My advice to the reader is:

1) Meet with your loved ones when everyone is feeling ok;
2) Decide who is the decision maker and who is the back up;
3) Discuss what the patient’s acceptable life and wishes are;
4) Document these wishes in the AHCD and POLST; and
5) Once all that is completed, go live life to the fullest.

I’d like to acknowledge and thank my Hawaii colleagues sited in this article and to those who helped me put this together. For more in depth information and resources on this topic, visit www.kokuamau.org.

MAREL VER, MD is a board-certified general surgeon practicing in West Oahu and past PMAH president. Her wide range of practice exposes her to important issues that inspires her to write about and share.